Results of 14 month old's evaluation - any feedback appreciated

[Anonymous]

I've mentioned in this forum my concerns about my 14 month old DS, and that I was having him evaluated through MoCo's Infants and Toddlers program. The second (more formal) part of the evaluation was today, after which we were given some feedback on his development in various areas. The evaluators did not leave a copy of the evaluaiont (I understood that it will be reviewed in detail before it a report is finalized), but my memory of the "scores" they mentioned is as follows:

Gross motor and Self-care - both 13 months
Receptive language/communication - I think this is the one that was 6 months
Expressive language/communication, Cognition, Fine motor, and Social development - all 9 or 10 months

So of the 5 potential areas in which he might eligible for Early Intervention Services (Cognitive development, Physical development, Speech and Language development, Psychosocial development and Self-help skills), he qualified in all but Self-help skills.

The only ones of these "scores" that really took me by surprise were the cognitive and the receptive language. We see DS figuring more and more things out on his own and problem-solving these past several weeks, and so I guess it was suprising to see that developmentally he's that far behind in cognition. But, the evaluators said that the cognition score is impacted a lot by the communication and fine motor issues (the fine motor delay was also a bit surprising, I guess), and that as those develop further the cognitive development follows along. And I guess that DH and I don't really know anyway what a 14 month old should be doing cognitively (DS is our first child). The other score that took me by surprise was the receptive language one, if I'm remembering correctly and that's indeed the one that was 6 months. I knew DS was very behind across the board in the area of communication, but it was a bit shocking to hear that in any area of development he is at only the 6 month level.

It was all a lot of information to take in today, and - not having some sort of report to refer back to just yet - I really can't recall all the details, and didn't ask the evaluators all the questions I wanted to ask, or even know what questions I might want to ask once I have some more time to think it all through. But, the impression I was left with from what they said and their responses to what I asked were that:

1) DS will have 1 weekly, ~1 hour long session with a single therapist who will address all of the areas in which he qualifies for services. These sessions will start in the next few weeks.
2) Any concerns we (DH and I, or DS's pediatrician) might have about autism or other specific developmental delay conditions/diagnoses should be addressed with his pediatrician. Infants and Toddlers will not do any of the specific diagnostic evaluations.
3) DS/his development/his progress will be re-assessed (I think only informally) in about 6 months, and in 1 year (I think more formally, to see whether he still qualifies for services).

So I guess that other than general feedback from anyone here with experience (which I would greatly, greatly appreciate - I would very much like to hear ANY and all thoughts you might have), my other questions really center around: what do I do from here? DS has his 15 month appointment with his Ped in a few weeks, and I will obviously discuss all of this with his Ped then. (However, I should mention that the Ped he had for the first ~11 months and who we LOVED and was very involved/attentive has now left the practice, and the other Peds we've seen at the practice since then don't really "know" my son the way his first Ped did.) But, given that I've read here that waiting times are very long for appointments with developmental pediatricians, should I go ahead and try to set up an appointment with one now for DS? If so, any specific recommendations? We are in MoCo, but our insurance covers us everywhere (assuming we'll have coverage for a developmental ped, which I need to check into obviously, but I know we don't need referrals for specialists), and so we can go anywhere in the DC region or anywhere outside the DC region, too. What else do I need or should I start looking into, to get my son the help that he needs? One weekly session to address all these different delays seems like it's not enough... but I don't really know what's typical, or how much progress he might make once DH and I are given some strategies to use with DS around the clock.

I may have further questions (I have a zillion questions, actually, but most aren't immediate or things that others could help with), but I would really, really appreciate any insight, thoughts, suggestions, comments, recommendations, etc. that anyone is able to offer. Thank you so much.

[Anonymous]

For a developmental pediatrician, Dr. Dan Shapiro. Google his number, he is in Rockville, MD. He may not be taking new patients currently but ask if you can get on his waitlist. If the waitlist is closed, keep calling until you can get on it.

Cannot recommend him enough. He does not take insurance but you can submit for reimbursement with your insurance. Good luck!

[Anonymous]

OP, to start with, your son is very, very young. As in very. What are your main concerns? I would get on the waitlist with Dr. Shapiro first thing, before doing anything else. By the time you get in, you may have a sharper grasp of the issues. Please try to remember that this is not a diagnosis -- EI is just a path to get services.

[Anonymous]

OP, are you ever around other children your son's age? My son is 17 months and has global delays. We have been in EI since he was about 5 months (automatically qualified due to a long NICU stay after being full term) and are adding services as we go (currently receiving ST, OT, PT, vision, and hearing). However, when I am not around other kids, I tend to think he's doing really well and making all kinds of progress. Then I am around another child around his age and I see just how far he still has to go (which is super hard, but also helpful at the same time). It might be eye opening to be around other kids his age if you are not already.

While a diagnosis could be helpful, EI is definitely the first step in just addressing what he is having trouble with. I just called Children's in Rockville yesterday to make our first dev. ped. appointment. It is about a 3 month wait.

Totally off topic, just wondering who your ped is. The one we had been seeing was totally awesome and recently left the practice and we don't like either of the others. We moved to MOCO over the summer and are hesitant to go through the process of finding another pediatrician/paying for records again so soon so are staying put for now.

[Anonymous]

Thank you PPs for the recommendation to get on Dr. Shapiro's waitlist. I will do that right away.

13:18, the specific concerns that led me to seek the evaluation with Infants and Toddlers were DS's issues in the area of communication. Expressive (verbal and gestures) and receptive communication both seemed to me to be delayed. At a little over 14 months now, he still does not point at things, does not shake his head no, does not wave goodbye (he has done so only a few times with a lot of prompting, but I prompt and example every day). His only real gesture, as far as I can tell, is reaching for things. In terms of verbal communication, his only words are dada and mama, and they are still often directed at things other than DH and me; though he babbles a lot, with intonation, and he will imitate some sounds we make. He has very little receptive language. He understands "no", he knows his name, and he seems to respond to the specific way that I refer to our cats; but he does not have any response to words we use multiple times per day, like book, bottle, bath, etc. He does not look at the door when you say "bye-bye" to him. He does not look for DH when I say something about "dada". He does seem to respond to a few commands if I use gestures with them ("sit down" and "close the lid" are the two that I can think of), but he does not have any response at all when I say something like "bring the book".

I've had some concerns about other things too - one being that he will share in experiences with us if we initiate them, but HE doesn't initiate sharing an experience with us (doesn't bring us things or hand us things or try to show us things). These things also seem like communication issues to me in a way, but maybe they're more social issues or something else; I don't really know. There are other things too (things he doesn't do that it seems he should, like trying to stack cups or big blocks, sort shapes, put things in a container - he doesn't do any of those, doesn't seem to have any interest in trying, even when I try to show him), but all the various aspects of communication have been what have stood out to me the most.

[Anonymous]

I'm sorry you had a really long post and I didn't read it all. My first thought is Relax, take a deep breath. Then I would put a call into get an appointment with a developmental pediatrician. Yes it can take 8 months to get the first appointment. But ... I got one for my son the next day, by calling on the day someone canceled. My child sees Dr. Gersh in Laurel (CNMC Outpatient Center). We are happy with him. He is very thorough but doesn't have a fuzzy personality.

I would call and make an appointment with someone (good especially at Childrens as they have more than one Dev Ped). Let them know that you are available for a canceled appointment. Call back every 2-3 weeks and let them know you are interested in a cancelled appointment. Make sure you are available as much as possible to take a last minute appointment. Or got to Kennedy Krieger in Baltimore, I'm not sure of the wait.

Also remember the evaluation is just one day. I remember our MCITP evaluation and my child got cognitive at 12 months, when he was 9 months. Then 2 years later we had him evaluated at KKI and he scored low on cognitive. We thought he might have a cognitive disability and I tried to get my head around that. But in the end, he is pretty average intelligence. It is just ONE DAY. Get your self a developmental pediatrician. You might want to go somewhere at 18-20 months and get a speech evaluation from another place. We went to TLC, just to make sure we had more information and would be offered therapy thru ITP.

[Anonymous]

Anonymous wrote:OP, are you ever around other children your son's age? My son is 17 months and has global delays. We have been in EI since he was about 5 months (automatically qualified due to a long NICU stay after being full term) and are adding services as we go (currently receiving ST, OT, PT, vision, and hearing). However, when I am not around other kids, I tend to think he's doing really well and making all kinds of progress. Then I am around another child around his age and I see just how far he still has to go (which is super hard, but also helpful at the same time). It might be eye opening to be around other kids his age if you are not already.

While a diagnosis could be helpful, EI is definitely the first step in just addressing what he is having trouble with. I just called Children's in Rockville yesterday to make our first dev. ped. appointment. It is about a 3 month wait.

Totally off topic, just wondering who your ped is. The one we had been seeing was totally awesome and recently left the practice and we don't like either of the others. We moved to MOCO over the summer and are hesitant to go through the process of finding another pediatrician/paying for records again so soon so are staying put for now.

Ped first because that's the easy one to answer! We're with Complete Care for Kids in Germantown. Dr. Hemm was his regular Ped there and she was AMAZING, but she left the practice in December for another practice, in the Baltimore area I believe. We loved her so much that I seriously thought about trying to find out what her new practice is and switching to that one instead just so we could keep seeing her, but then realized that Baltimore is pretty far to go for sick appointments and the like. We've seen both of the other Peds at the practice in the months since Dr. Hemm left, and I just don't feel the same kind of connection at all. For DS's 12 month appointment it was very clear that the Ped we saw hadn't even really read his chart ahead of time. We had tons of issues with reflux, feeding and food intollerances in DS's first year, and saw Dr. Hemm at least 15 times in those first 11 months (and were referred to Ped GIs, for allergy testing, etc.), and I'm sure all of what was going on was documented in his file... but the Ped we saw for that well-child visit had no idea. I've been wondering too whether we should look for a new practice. I'm still mourning the fact that Dr. Hemm left!

Regarding other kids... We've spent some time around other kids his age in a few settings, but not consistently. When we do though, it's pretty similar to what you're describing in that I feel like he seems further behind them than I would expect. I remember being in the grocery store with him when he was 11 months old, and there was another woman with her daughter in the baby aisle, who said her daughter was also 11 months old. I said hello to the daughter, and when she smiled at me I said something about how many teeth she had... and the little girl pointed at her teeth. It took me by surprise and made me sad almost instantly - my son was nowhere close to being able to point at his teeth at 11 months, and still isn't doing anything like that 14 months. Another example: I took him to a Mommy and Me class once/week from 12-13.5 months, and though he was the youngest there by 2 months, he seemed more than 2 months behind the other kids. They would pick things up and turn them around and seem be examining how they go together or trying to pull them apart... while my son would just put them in his mouth. Similarly, we see DS's cousin who is 3.5 months older about once every other month, and other than in gross motor skills, DS doesn't seem to be doing the things that I recall his cousin doing a few months prior. I don't know if this will make sense... but when I see other kids around the same age, they just seem to be more aware than DS is. DS is very active and goes from one thing to the next to the next to the next, or turns his head from one direction to the other to look at different things when we're in a store, or grabs for this toy and then that toy and then another toy when he's playing. He seldom seems to stop and focus on any one thing; it's all just brief input and then he's on to the next thing, like he needs constant stimulation with new/different things. I don't know what that means, or if it means anything at all.

Anyway, I'm babbling. DS is also around other kids of similar ages at daycare (in-home), but I don't spend enough time there with him to see how he compares to the other kids that are kind of similar in age (there are two that are 3 months younger, and one about 4 months older). The biggest difference I note in the 10 minutes I'm there each day is maybe just the awareness thing. The other kids look at me and watch me when I'm there, smile at me when I smile at them or talk to them, and their attention stays primarily on me when I'm talking to the providers... whereas DS looks/smiles at me briefly, or looks and smiles at the caregivers and other adults briefly, and then immediately moves on to something else. I have a hard time getting him to even look at me when I'm trying to say goodbye to him.

Anyway, thank you for your feedback. It's really helpful.

[Anonymous]

Anonymous wrote:I'm sorry you had a really long post and I didn't read it all. My first thought is Relax, take a deep breath. Then I would put a call into get an appointment with a developmental pediatrician. Yes it can take 8 months to get the first appointment. But ... I got one for my son the next day, by calling on the day someone canceled. My child sees Dr. Gersh in Laurel (CNMC Outpatient Center). We are happy with him. He is very thorough but doesn't have a fuzzy personality.

I would call and make an appointment with someone (good especially at Childrens as they have more than one Dev Ped). Let them know that you are available for a canceled appointment. Call back every 2-3 weeks and let them know you are interested in a cancelled appointment. Make sure you are available as much as possible to take a last minute appointment. Or got to Kennedy Krieger in Baltimore, I'm not sure of the wait.

Also remember the evaluation is just one day. I remember our MCITP evaluation and my child got cognitive at 12 months, when he was 9 months. Then 2 years later we had him evaluated at KKI and he scored low on cognitive. We thought he might have a cognitive disability and I tried to get my head around that. But in the end, he is pretty average intelligence. It is just ONE DAY. Get your self a developmental pediatrician. You might want to go somewhere at 18-20 months and get a speech evaluation from another place. We went to TLC, just to make sure we had more information and would be offered therapy thru ITP.

I'm sorry, I tend to write a lot. Too many thoughts!

I appreciate the feedback on getting the appointments. I WAH with a pretty flexible schedule, and so can usually be pretty available for a cancellation. I will definitely take the advice of trying back often.

And thanks to you and the PP who suggested that I remember that this is just a snapshot, and just an evaluation to determine eligibility for services. The evaluators said essentially the same thing, and to not focus too much on the "scores". I do realize that. The thing is, I've suspected that there are issues, but this is the first confirmation I've had from someone who knows about child development. I am both disappointed that I was right about there being delays (I would have loved to hear that there are none), and also a little relieved to know that I'm not crazy and just seeing things (though again, I would have preferred that!). A lot of people (grandparents, friends) have made me feel that way a little... that I was over-reacting or expecting too much of DS, that he's "just a boy" (as opposed to a girl), that everyone knows someone whose child didn't speak until they were three and that kid is just fine, etc. It's not just that DS doesn't have many words; if it was, I probably wouldn't have even thought to have him evaluated for anything. It's the overall picture that led me to suspect he was delayed. What the cause or issue might be, if there is one, I don't know... I just know that he doesn't seem to be doing what he should at his age, in more than one specific area (i.e. speaking a few words).

[Anonymous]

Anonymous wrote:Thank you PPs for the recommendation to get on Dr. Shapiro's waitlist. I will do that right away.

13:18, the specific concerns that led me to seek the evaluation with Infants and Toddlers were DS's issues in the area of communication. Expressive (verbal and gestures) and receptive communication both seemed to me to be delayed. At a little over 14 months now, he still does not point at things, does not shake his head no, does not wave goodbye (he has done so only a few times with a lot of prompting, but I prompt and example every day). His only real gesture, as far as I can tell, is reaching for things. In terms of verbal communication, his only words are dada and mama, and they are still often directed at things other than DH and me; though he babbles a lot, with intonation, and he will imitate some sounds we make. He has very little receptive language. He understands "no", he knows his name, and he seems to respond to the specific way that I refer to our cats; but he does not have any response to words we use multiple times per day, like book, bottle, bath, etc. He does not look at the door when you say "bye-bye" to him. He does not look for DH when I say something about "dada". He does seem to respond to a few commands if I use gestures with them ("sit down" and "close the lid" are the two that I can think of), but he does not have any response at all when I say something like "bring the book".

I've had some concerns about other things too - one being that he will share in experiences with us if we initiate them, but HE doesn't initiate sharing an experience with us (doesn't bring us things or hand us things or try to show us things). These things also seem like communication issues to me in a way, but maybe they're more social issues or something else; I don't really know. There are other things too (things he doesn't do that it seems he should, like trying to stack cups or big blocks, sort shapes, put things in a container - he doesn't do any of those, doesn't seem to have any interest in trying, even when I try to show him), but all the various aspects of communication have been what have stood out to me the most.

OP, I don't have any specific advice but wanted to offer encouragement. My DS was the same age and had similar lack of communication/gestures several months ago. He also didn't have any words. We've been doing speech for 1 month and I'm already seeing improvement. Pointing, a couple signs, waving. He has started saying "mmmm" for more. I'm really happy with his progress.
Like you, I was doing a ton at home and honestly the professionals aren't doing anything different than what I do, BUT there is something about having this new exciting person demonstrating everything that really engages my son. EI has made a big impact.

So have hope! You're just getting started. And kudos to you for jumping on this early! I've had criticism from others that my son is too young and that I should "chill", but early intervention is the way to go. My son will hopefully have overcome his communication delays before his social development kicks in. I'm grateful we didn't wait.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, are you ever around other children your son's age? My son is 17 months and has global delays. We have been in EI since he was about 5 months (automatically qualified due to a long NICU stay after being full term) and are adding services as we go (currently receiving ST, OT, PT, vision, and hearing). However, when I am not around other kids, I tend to think he's doing really well and making all kinds of progress. Then I am around another child around his age and I see just how far he still has to go (which is super hard, but also helpful at the same time). It might be eye opening to be around other kids his age if you are not already.

While a diagnosis could be helpful, EI is definitely the first step in just addressing what he is having trouble with. I just called Children's in Rockville yesterday to make our first dev. ped. appointment. It is about a 3 month wait.

Totally off topic, just wondering who your ped is. The one we had been seeing was totally awesome and recently left the practice and we don't like either of the others. We moved to MOCO over the summer and are hesitant to go through the process of finding another pediatrician/paying for records again so soon so are staying put for now.

Ped first because that's the easy one to answer! We're with Complete Care for Kids in Germantown. Dr. Hemm was his regular Ped there and she was AMAZING, but she left the practice in December for another practice, in the Baltimore area I believe. We loved her so much that I seriously thought about trying to find out what her new practice is and switching to that one instead just so we could keep seeing her, but then realized that Baltimore is pretty far to go for sick appointments and the like. We've seen both of the other Peds at the practice in the months since Dr. Hemm left, and I just don't feel the same kind of connection at all. For DS's 12 month appointment it was very clear that the Ped we saw hadn't even really read his chart ahead of time. We had tons of issues with reflux, feeding and food intollerances in DS's first year, and saw Dr. Hemm at least 15 times in those first 11 months (and were referred to Ped GIs, for allergy testing, etc.), and I'm sure all of what was going on was documented in his file... but the Ped we saw for that well-child visit had no idea. I've been wondering too whether we should look for a new practice. I'm still mourning the fact that Dr. Hemm left!

Regarding other kids... We've spent some time around other kids his age in a few settings, but not consistently. When we do though, it's pretty similar to what you're describing in that I feel like he seems further behind them than I would expect. I remember being in the grocery store with him when he was 11 months old, and there was another woman with her daughter in the baby aisle, who said her daughter was also 11 months old. I said hello to the daughter, and when she smiled at me I said something about how many teeth she had... and the little girl pointed at her teeth. It took me by surprise and made me sad almost instantly - my son was nowhere close to being able to point at his teeth at 11 months, and still isn't doing anything like that 14 months. Another example: I took him to a Mommy and Me class once/week from 12-13.5 months, and though he was the youngest there by 2 months, he seemed more than 2 months behind the other kids. They would pick things up and turn them around and seem be examining how they go together or trying to pull them apart... while my son would just put them in his mouth. Similarly, we see DS's cousin who is 3.5 months older about once every other month, and other than in gross motor skills, DS doesn't seem to be doing the things that I recall his cousin doing a few months prior. I don't know if this will make sense... but when I see other kids around the same age, they just seem to be more aware than DS is. DS is very active and goes from one thing to the next to the next to the next, or turns his head from one direction to the other to look at different things when we're in a store, or grabs for this toy and then that toy and then another toy when he's playing. He seldom seems to stop and focus on any one thing; it's all just brief input and then he's on to the next thing, like he needs constant stimulation with new/different things. I don't know what that means, or if it means anything at all.

Anyway, I'm babbling. DS is also around other kids of similar ages at daycare (in-home), but I don't spend enough time there with him to see how he compares to the other kids that are kind of similar in age (there are two that are 3 months younger, and one about 4 months older). The biggest difference I note in the 10 minutes I'm there each day is maybe just the awareness thing. The other kids look at me and watch me when I'm there, smile at me when I smile at them or talk to them, and their attention stays primarily on me when I'm talking to the providers... whereas DS looks/smiles at me briefly, or looks and smiles at the caregivers and other adults briefly, and then immediately moves on to something else. I have a hard time getting him to even look at me when I'm trying to say goodbye to him.

Anyway, thank you for your feedback. It's really helpful.

SOOOOO crazy! This is PP and we were seeing Dr. Hemm, too! Love, love, loved her. We actually started with her after a recommendation from DCUM when we moved which had mentioned how involved she was with her patients. She was the best and had even given us her cell number when we were in the midst of a bad illness. Yes, I feel similarly that the other two are not as vested and have not taken the time to get to know or remember our issues. I feel like every time we've gone in since December I've had to re-explain everything. So frustrating! So you must live near Germantown, then? We probably don't live very far from each other. We're in Montgomery Village. I don't know if you'd ever be interested in getting together for a playdate and to talk through things.

Yes, I understand completely what you are saying about being aware. We had our older son's friend over today and his little sister came, too. She is just a month older than my little guy and so, so different. My son will also not go get an items that we mention, look at another person/object when we ask about them, touch his nose, etc. However, he does have hearing loss in one ear and we got a hearing aid a couple months ago... so I'm hoping that at least part of our issue with receptive/expressive language will be helped now that he can hear through both ears. Have you had your son's hearing checked?

Anyway, I'm not sure how we would set up to meet through this site, but I would definitely be interested in getting together if you are .

[Anonymous]

I'm confused. How did he qualify in Gross Motor, if he's testing at 13 months, age 14 months? That's basically normal.

[Anonymous]

OP not to downplay your concerns, but my first son did not say a word until he was about 18-19 months, and thats when he started waving and pointing, nothing until then. He started walking at 15 months. At 18 months language just started pouring out of him, by the time he was 2 he was speaking in complex sentences. Same thing with walking, as soon as he figured out his first step he took off running.

[Anonymous]

I remember feeling exactly the same when they told me my then 2.5 year old DD would be eligible for services.
Partially relieved, just as you were that my concerns were validated and I now had a professional team to turn to rather than the whirring, anxious thoughts and questions in my own head and Dr. Google. At the same time, my heart sank a bit and in a way I was surprised that they didn't just tell me I was overreacting or that her issues were within the normal range. Your DS is so young and it is fabulous that you are getting connected to services and professional guidance so early. Kudos to you - as hard as the "not knowing" is to live and deal with, you can take comfort that you are doing everything right, everything you can for your bit in getting the ball rolling and the help he needs. You are a good mama.
My DD is now 7 and has come so far - partially due to services, and partially due to maturity. But I know what you mean about "awareness" - other children could hear my words and if could see on their face that they were taking them in, or processing them. With my DD the words never seemed to penetrate, with the exception of very concrete, basic things. But she has grown by leaps and bounds, and your DS will too.

[Anonymous]

Anonymous wrote:OP not to downplay your concerns, but my first son did not say a word until he was about 18-19 months, and thats when he started waving and pointing, nothing until then. He started walking at 15 months. At 18 months language just started pouring out of him, by the time he was 2 he was speaking in complex sentences. Same thing with walking, as soon as he figured out his first step he took off running.

PP here, with the 7 year old DD. I have known lots of "late bloomers" who have been behind their peers and caught up - it has happened enough (with friends and neighbors) that I always consider it a possibility when a child seems delayed.

[Anonymous]

OP, could you describe how DS typically spends his days?