2+ year waitlist for developmental pediatrician for 4y/o. What now?
August 5, 2023 6:58 AM Subscribe
4 year old son is struggling with fine motor skills, attention span, speech and there are waitlists for the waitlists at every developmental pediatrician we've found nearby. How do we help our kid?
Dad of a 4.5 year old boy here. My son attends preschool full time, is currently receiving weekly occupational therapy and was receiving weekly speech therapy for receptive/expressive speech until we recently moved.
We are in the Chicago area and have been trying to get him a developmental pediatrician screening since he was 3.5; we are currently on a 30 month wait-list with our healthcare network for him and have not had any luck finding availability for developmental pediatrician screenings or assessments elsewhere -- everyone is fully booked and has waitlists for the waitlists basically.
Our major concern is helping our son with his communication difficulties--he has a lot of problems staying on-topic and carrying on conversations with peers--and to build his attention span in situations where it's important (walking in busy places, sports, interacting with teachers/grownups)
Kiddo was a gestalt language learner who had echolalia when he was younger; that's gone but he frequently struggles with remembering names and in communication with other kids while he will remember minute details from a story or a tv show he watches. He goes all out for physical play but struggles with sitting still for even 30 seconds except for tv, tablets and storytime. He plays with other kids but will then go off by himself to climb or run/jump. He has a very hard time with attention span and focus and I can see him struggling. Preschool teachers report challenges having him engaging in tasks with classmates or getting him to sit still/do anything that doesn't involve storytime or active physical play.
I want to help my kiddo build up his attention span and communication skills but don't know where to start and think that at least having a diagnosis could help us figure out a plan of attack. My wife and I feel like we don't know how to help our kid, that we don't have resources and that we're completely out of our depth.
Our pediatrician told us that it's probably ADHD but he's too young to diagnose and his old occupational therapist was like "I know autistic and I can't say he's not autistic, but he's not autistic."
Both my wife and I have diagnosed ADHD and I suspect my son has something similar but I just don't know how to help him build his skills when I can't even get a proper evaluation of his childhood development by an outsider. I feel like I'm just jumping from resource to resource hoping I can find something that sticks.
So how do we help our kid?
Dad of a 4.5 year old boy here. My son attends preschool full time, is currently receiving weekly occupational therapy and was receiving weekly speech therapy for receptive/expressive speech until we recently moved.
We are in the Chicago area and have been trying to get him a developmental pediatrician screening since he was 3.5; we are currently on a 30 month wait-list with our healthcare network for him and have not had any luck finding availability for developmental pediatrician screenings or assessments elsewhere -- everyone is fully booked and has waitlists for the waitlists basically.
Our major concern is helping our son with his communication difficulties--he has a lot of problems staying on-topic and carrying on conversations with peers--and to build his attention span in situations where it's important (walking in busy places, sports, interacting with teachers/grownups)
Kiddo was a gestalt language learner who had echolalia when he was younger; that's gone but he frequently struggles with remembering names and in communication with other kids while he will remember minute details from a story or a tv show he watches. He goes all out for physical play but struggles with sitting still for even 30 seconds except for tv, tablets and storytime. He plays with other kids but will then go off by himself to climb or run/jump. He has a very hard time with attention span and focus and I can see him struggling. Preschool teachers report challenges having him engaging in tasks with classmates or getting him to sit still/do anything that doesn't involve storytime or active physical play.
I want to help my kiddo build up his attention span and communication skills but don't know where to start and think that at least having a diagnosis could help us figure out a plan of attack. My wife and I feel like we don't know how to help our kid, that we don't have resources and that we're completely out of our depth.
Our pediatrician told us that it's probably ADHD but he's too young to diagnose and his old occupational therapist was like "I know autistic and I can't say he's not autistic, but he's not autistic."
Both my wife and I have diagnosed ADHD and I suspect my son has something similar but I just don't know how to help him build his skills when I can't even get a proper evaluation of his childhood development by an outsider. I feel like I'm just jumping from resource to resource hoping I can find something that sticks.
So how do we help our kid?
IANAD, my comments are practical in nature.
A diagnosis is most useful for money: convincing insurance to pay for interventions you want, and convincing schools to provide an IEP or similar. How cooperative has your insurance been? Your preschool? A diagnosis can suggest interventions, but there is a lot of heterogeneity in what will actually be useful to you, and a lot of overlap between diagnoses in what is useful as well, with the exception of stimulant drugs.
The two year wait list is faintly ridiculous, but unfortunately unsurprising. The good news is, if you continue to be stuck in the queue, by the time you make it to the front, that’ll be right around the age when these difficulties start having consequences in schools.
You say he’s being seen by an OT. Can you ask that person questions like: We think he might be a kid who gets an ADHD diagnosis down the line; what would you do differently if he had one? Can we try those things? And what would you suggest his preschool try?
There is a curriculum I am always recommending for neurodivergent school aged kids, Superflex, but he is just too young for it now. But you might be able to adapt some of the games to be age appropriate. Obstacle courses might be good — our kid’s OT was big into using those to teach planning and task switching. We also tried martial arts classes for burning off energy and gaining practice in group social skills (listening to directions, sitting still in a line when told to) and one on one (finding a partner, taking turns). We didn’t love our studio in the end but in Chicagoland you probably have lots of options.
What would it look like if you leaned hard into the things he likes as a place to teach skills, instead of trying to mold him more directly? Sign him up for the most high-energy childcare options you can find? Put him in some kind of athletic activity where he might naturally find a reason and a topic for engaging with peers? Read to him even more, in a setting at home similar to circle time, so he associates sitting still on a carpet with a really great time? He’s still a young child and the advice we got all the way through age six was, don’t try to fix the child, try to fix the setting to match the child. Not always practical! But a good idea, I think, when you do have options.
Finally, if in several years this is still a struggle and you’re still in Chicago, MeMail me if you want intel on a school that seems pretty good for a couple of neurodivergent kids I know.
posted by eirias at 7:37 AM on August 5, 2023 [11 favorites]
A diagnosis is most useful for money: convincing insurance to pay for interventions you want, and convincing schools to provide an IEP or similar. How cooperative has your insurance been? Your preschool? A diagnosis can suggest interventions, but there is a lot of heterogeneity in what will actually be useful to you, and a lot of overlap between diagnoses in what is useful as well, with the exception of stimulant drugs.
The two year wait list is faintly ridiculous, but unfortunately unsurprising. The good news is, if you continue to be stuck in the queue, by the time you make it to the front, that’ll be right around the age when these difficulties start having consequences in schools.
You say he’s being seen by an OT. Can you ask that person questions like: We think he might be a kid who gets an ADHD diagnosis down the line; what would you do differently if he had one? Can we try those things? And what would you suggest his preschool try?
There is a curriculum I am always recommending for neurodivergent school aged kids, Superflex, but he is just too young for it now. But you might be able to adapt some of the games to be age appropriate. Obstacle courses might be good — our kid’s OT was big into using those to teach planning and task switching. We also tried martial arts classes for burning off energy and gaining practice in group social skills (listening to directions, sitting still in a line when told to) and one on one (finding a partner, taking turns). We didn’t love our studio in the end but in Chicagoland you probably have lots of options.
What would it look like if you leaned hard into the things he likes as a place to teach skills, instead of trying to mold him more directly? Sign him up for the most high-energy childcare options you can find? Put him in some kind of athletic activity where he might naturally find a reason and a topic for engaging with peers? Read to him even more, in a setting at home similar to circle time, so he associates sitting still on a carpet with a really great time? He’s still a young child and the advice we got all the way through age six was, don’t try to fix the child, try to fix the setting to match the child. Not always practical! But a good idea, I think, when you do have options.
Finally, if in several years this is still a struggle and you’re still in Chicago, MeMail me if you want intel on a school that seems pretty good for a couple of neurodivergent kids I know.
posted by eirias at 7:37 AM on August 5, 2023 [11 favorites]
Do you have an employee assistance program (EAP)? This is the sort of problem that they are supposed to help you with.
posted by alex1965 at 7:40 AM on August 5, 2023 [1 favorite]
posted by alex1965 at 7:40 AM on August 5, 2023 [1 favorite]
Psychologists can also do assessments. While you wait for the developmental.pediatrician get an assessment from a psychologist. At least then you'll have a preliminary diagnosis and can start getting support. Here's one clinic I found just by googling. Not an endoresement, just an example of the kind of clinic I'm suggesting.
Given that several of the things you're listing are associated with asd, it's probably worthwhile to do that assessment just because if you don't, everyone you interact with professionally will have the question at the back of their mind.
posted by If only I had a penguin... at 7:42 AM on August 5, 2023 [2 favorites]
Given that several of the things you're listing are associated with asd, it's probably worthwhile to do that assessment just because if you don't, everyone you interact with professionally will have the question at the back of their mind.
posted by If only I had a penguin... at 7:42 AM on August 5, 2023 [2 favorites]
Apologies if this is too obvious, but are you calling individual pediatricians, or have you tried the departments for developmental pediatrics at Northwestern and U of Chicago? They would have several doctors as well as residents, so maybe they could get you in to see somebody sooner.
(My niece sees a specialist at U of Chicago for a different pediatric situation, and it's been a very good experience. And physicians at teaching hospitals are more likely to be up on the latest research. Also, I bring up those two centers because as a person with a rare cancer, those are the only places I'd consider if I lived in Chicago. I've seen enough people getting very bad advice and wildly inaccurate life expectancy info from individual oncologists.)
posted by FencingGal at 8:27 AM on August 5, 2023
(My niece sees a specialist at U of Chicago for a different pediatric situation, and it's been a very good experience. And physicians at teaching hospitals are more likely to be up on the latest research. Also, I bring up those two centers because as a person with a rare cancer, those are the only places I'd consider if I lived in Chicago. I've seen enough people getting very bad advice and wildly inaccurate life expectancy info from individual oncologists.)
posted by FencingGal at 8:27 AM on August 5, 2023
Seconding seeing what your school district has. The districts I'm familiar with have programs starting with three-year-olds (and some related ones for birth-to-three). You should be able to find it by looking up your school district plus "early intervention" or "child find."
posted by The corpse in the library at 8:34 AM on August 5, 2023 [5 favorites]
posted by The corpse in the library at 8:34 AM on August 5, 2023 [5 favorites]
Seconding The corpse in the library. Your local school district will do this, for free, within a legally mandated timeline. Send your request in writing. if you can't find information about early intervention or child find, just email the director of the special education department (should be easily found on their website).
posted by Nickel at 11:26 AM on August 5, 2023 [5 favorites]
posted by Nickel at 11:26 AM on August 5, 2023 [5 favorites]
Are you only looking at developmental pediatricians? They are very hard to get appointments with. You should also be checking child development clinics at hospitals, and private psychology practices. At 4.5 you should also be getting started on getting an IEP in place - the evaluation you get for that has a regulatory deadline so you should be able to get that done within the next few months.
As for therapy - you’re already getting therapy for the challenges you know about (speech and OT) so you really don’t need a diagnosis for that.
What you really need to focus on right now is setting up supports for Kindergarten with an IEP and investigating any inclusion programs that may be available. Most states (not sure about Illinois) don’t even require a diagnosis - it can be labeled “developmental delay,” most likely on the basis of speech and attention.
posted by haptic_avenger at 12:15 PM on August 5, 2023 [3 favorites]
As for therapy - you’re already getting therapy for the challenges you know about (speech and OT) so you really don’t need a diagnosis for that.
What you really need to focus on right now is setting up supports for Kindergarten with an IEP and investigating any inclusion programs that may be available. Most states (not sure about Illinois) don’t even require a diagnosis - it can be labeled “developmental delay,” most likely on the basis of speech and attention.
posted by haptic_avenger at 12:15 PM on August 5, 2023 [3 favorites]
(Oh and BTW - our OT also said “not autism” at 4 and we got the autism dx at 7. Our child is very outgoing and communicative so he did not present as autistic at 4.)
posted by haptic_avenger at 12:18 PM on August 5, 2023 [3 favorites]
posted by haptic_avenger at 12:18 PM on August 5, 2023 [3 favorites]
I think your child is most likely not neurotypical, and it's safest to proceed with that as the default assumption unless you learn otherwise.
First, re professionals: you should look for a good psychologist; they can determine whether your child has a specific diagnosis or diagnoses. A diagnosis is not in itself a plan of action but it can help in formulating one.
Also, it would be good to find a speech & language therapist to continue the speech therapy; but you are probably looking for one already.
Now, the most important thing I am going to say is that you should think not in terms of a cure or fix, but rather in terms of providing accomodations for your child and demanding accomodations from others.
I want to gently cite a couple of sentences from your post, not at a criticism, but rather as revealing expectations that are not fair to your child: "he has a lot of problems staying on-topic and carrying on conversations with peers--and to build his attention span in situations where it's important (... sports, interacting with teachers/grownups)... struggles with sitting still for even 30 seconds ... plays with other kids but will then go off by himself to climb or run/jump"
These are all perfectly normal behaviors for a neurodivergent child. So, the most important thing is for you to let go of the expectation that your child can be forced to operate as if he were a neurotypical child. Forcing neurotypical expectations on a neurodivergent child will do no good, and it can do a lot of harm.
It is OK for an ND kid to not carry on conversations with peers.
It is OK for an ND kid to not sit still.
It is OK for an ND kid to struggle with sports.
Letting go of these expectations will make his life, and your life, much better. It's not to say that your child will never thrive in school - quite the contrary. A neurodivergent child, given appropriate accomodations, can thrive and flourish. But you can't rush it and you can't force it.
Instead of trying to shoehorn your kid into neurotypical expectations - which won't work - consider demanding the accomodations he needs. Can he be provided a sensory swing or trampoline at preschool? Can he be put in a smaller group? Can he be provided quiet time when needed? Will the adults respect his desire to not engage when he is not feeling social?
Advocating for your child in an ableist world will not be easy. And you have to be patient and compassionate with yourself and others as you go along. But this is the best and the only road to a better life.
I am parent to a neurodivergent child FWIW, and have spent much of the last few years learning and discovering how altering my own expectations has led to a better life for my child and for all of us.
posted by splitpeasoup at 12:24 PM on August 5, 2023 [10 favorites]
First, re professionals: you should look for a good psychologist; they can determine whether your child has a specific diagnosis or diagnoses. A diagnosis is not in itself a plan of action but it can help in formulating one.
Also, it would be good to find a speech & language therapist to continue the speech therapy; but you are probably looking for one already.
Now, the most important thing I am going to say is that you should think not in terms of a cure or fix, but rather in terms of providing accomodations for your child and demanding accomodations from others.
I want to gently cite a couple of sentences from your post, not at a criticism, but rather as revealing expectations that are not fair to your child: "he has a lot of problems staying on-topic and carrying on conversations with peers--and to build his attention span in situations where it's important (... sports, interacting with teachers/grownups)... struggles with sitting still for even 30 seconds ... plays with other kids but will then go off by himself to climb or run/jump"
These are all perfectly normal behaviors for a neurodivergent child. So, the most important thing is for you to let go of the expectation that your child can be forced to operate as if he were a neurotypical child. Forcing neurotypical expectations on a neurodivergent child will do no good, and it can do a lot of harm.
It is OK for an ND kid to not carry on conversations with peers.
It is OK for an ND kid to not sit still.
It is OK for an ND kid to struggle with sports.
Letting go of these expectations will make his life, and your life, much better. It's not to say that your child will never thrive in school - quite the contrary. A neurodivergent child, given appropriate accomodations, can thrive and flourish. But you can't rush it and you can't force it.
Instead of trying to shoehorn your kid into neurotypical expectations - which won't work - consider demanding the accomodations he needs. Can he be provided a sensory swing or trampoline at preschool? Can he be put in a smaller group? Can he be provided quiet time when needed? Will the adults respect his desire to not engage when he is not feeling social?
Advocating for your child in an ableist world will not be easy. And you have to be patient and compassionate with yourself and others as you go along. But this is the best and the only road to a better life.
I am parent to a neurodivergent child FWIW, and have spent much of the last few years learning and discovering how altering my own expectations has led to a better life for my child and for all of us.
posted by splitpeasoup at 12:24 PM on August 5, 2023 [10 favorites]
Just in case you are in the city and you didn't know Here is the Chicago Pulblic School info for early childhood. From what I understand, your child does not need to be currently enrolled in CPS to be assessed just live within the city boundries.
posted by AlexiaSky at 1:20 PM on August 5, 2023 [1 favorite]
posted by AlexiaSky at 1:20 PM on August 5, 2023 [1 favorite]
We used to live in the northern Chicago suburbs and we were desperate to find help for our child. Our pediatrician kept telling us he was fine. He has moderate special needs that will be with him for his lifetime. We got a new pediatrician who doesn't exactly specialize in developmental issues but she was a huge support to us and helped us get appointments with other specialists. I agree two years is way too long to wait.
Dr. Lori Walsh
Advocate Children's Medical Group
2551 Compass Drive
Glenview IL
847-729-6445
I still have all my notes from those days and would be glad to share more information with you. Feel free to memail me; I promise to respect your desire for anonymity.
posted by Kangaroo at 1:32 PM on August 5, 2023 [2 favorites]
Dr. Lori Walsh
Advocate Children's Medical Group
2551 Compass Drive
Glenview IL
847-729-6445
I still have all my notes from those days and would be glad to share more information with you. Feel free to memail me; I promise to respect your desire for anonymity.
posted by Kangaroo at 1:32 PM on August 5, 2023 [2 favorites]
Preschool teacher here. I'm not in Chicago land, but here in Cleveland we have been able to help get kids into Early Intervention. Does his center do assessments like the ASQ? You can take those to your doctor as well as any educational/developmental goals the school has written. In Ohio, we are required to do assessments every year (more frequently is ok) and write goals as well.
posted by kathrynm at 2:22 PM on August 5, 2023
posted by kathrynm at 2:22 PM on August 5, 2023
Please be aware that the American Medical Association is in the process of removing its support for behavioural interventions for neurodivergent children (in particular ABA and its derivatives, including Early Intervention) on the grounds that they cause lifelong harm. Also seconding splitpeasoup's excellent advice. (I am a neurodivergent person and former neurodivergent child and was lucky enough to escape diagnosis and intentional behaviour-modification therapies in the 1980s, though I did not escape bullying.)
posted by heatherlogan at 2:49 PM on August 5, 2023 [2 favorites]
posted by heatherlogan at 2:49 PM on August 5, 2023 [2 favorites]
Early invention in Chicago is zero to 3 and its a hard limit which is why I provided the information above about the Early learning programs which serve 3 to 5. I am posting this because I don't think it's a distinction that is made in other places but here that's a thing. It may not even be as true in the suburbs of Chicago.
I used EI services in Chicago for my little one for a little bit through IDHS. I had private insurance but we did the city services, they billed the insurance and there was a sliding scale fee that was entirely reasonable for what the insurance didn't like.
I found the city process actually quite streamlined and straightforward once we reached out and I was in agreement with their assessments.
If you want more information on that feel free to reach out to me via pm. I'm happy to chat.
posted by AlexiaSky at 6:34 PM on August 5, 2023 [2 favorites]
I used EI services in Chicago for my little one for a little bit through IDHS. I had private insurance but we did the city services, they billed the insurance and there was a sliding scale fee that was entirely reasonable for what the insurance didn't like.
I found the city process actually quite streamlined and straightforward once we reached out and I was in agreement with their assessments.
If you want more information on that feel free to reach out to me via pm. I'm happy to chat.
posted by AlexiaSky at 6:34 PM on August 5, 2023 [2 favorites]
We were in a similar situation and ended up finding a psychologist to evaluate and diagnose ADHD and then started play therapy with the psychologist's colleage who seemed like a better kid-friendly fit. The counselor at school who was seeing my son biweekly recommended play therapy so we looked for that near us when we couldnt even get on waitlists for developmental pediatricians. It's hard to tell with a 6 year old if the play therapy "working" after just 2 months, especially since school is not in session now, but the therapist does talk to him about techniques to notice if my son is getting distracted, or frustrated, teaches him compromise, etc., and my son likes it and we already met our health insurance deductible for the year so we will keep going.
The evaluation and diagnosis for ADHD will help us get a 504 plan for school. We had one in pre-k that basically consisted of the teacher's aide to remind my son to do his work, and rearranged the seating in a way so my son doesn't face the whole class and get distracted. Since he won't have an aide in the classroom for 1st grade, we are getting the 504 plan again to request an aide and/or accommodations to remind him to do his work, give him extra breaks, etc., depending on what his therapist recommends.
So that might be a workaround to get around needing a development pediatrician asap if your kiddo can start getting more help in the meantime. And I second trying to work with the current OT to try to see if (s)he can work in some exercises for all the things you mentioned your son needs help with. Is the OT part of a larger therapy group? Do they have other therapists that specialize in those things? Can they recommend someone? Just so you get *some* help working on the things he needs help with in the meantime while you wait for thorough evaluations.
posted by never.was.and.never.will.be. at 9:32 PM on August 5, 2023 [1 favorite]
The evaluation and diagnosis for ADHD will help us get a 504 plan for school. We had one in pre-k that basically consisted of the teacher's aide to remind my son to do his work, and rearranged the seating in a way so my son doesn't face the whole class and get distracted. Since he won't have an aide in the classroom for 1st grade, we are getting the 504 plan again to request an aide and/or accommodations to remind him to do his work, give him extra breaks, etc., depending on what his therapist recommends.
So that might be a workaround to get around needing a development pediatrician asap if your kiddo can start getting more help in the meantime. And I second trying to work with the current OT to try to see if (s)he can work in some exercises for all the things you mentioned your son needs help with. Is the OT part of a larger therapy group? Do they have other therapists that specialize in those things? Can they recommend someone? Just so you get *some* help working on the things he needs help with in the meantime while you wait for thorough evaluations.
posted by never.was.and.never.will.be. at 9:32 PM on August 5, 2023 [1 favorite]
I can't offer anything useful about getting into proper medical care, but in the meantime, if you're able and willing to do so, a change of preschool might be something helpful. I don't know how close you are to the Botanical Gardens (or how much cash you have to spend), but I know that up here in Minnesota, I've heard a lot of good things with kids like yours in outdoor, forest preschools. If you look around for "forest preschools in chicago" you'll find others that might work for you.
posted by RedEmma at 3:17 PM on August 6, 2023
posted by RedEmma at 3:17 PM on August 6, 2023
Based on what you said, you definitely want a Psychologist (PhD or PsyD), more than a Doctor (MD). In many places, this kind of Assessment can only be done by psychologists, and so even if you were to see the MD pediatrician first, you would probably get referred out to a Psychologist.
Might as well get that started now.
posted by soylent00FF00 at 7:28 PM on August 6, 2023
Might as well get that started now.
posted by soylent00FF00 at 7:28 PM on August 6, 2023
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Also, this might feel like banging your head against a wall but when I was trying to get an earlier appointment with a health care provider, I literally said, “I really want to get in as soon as I can, is it okay if I call you back every day to see if there’s been a cancellation?” That provider’s receptionist stuck a post-it note on her computer with my name and number to call if there was a cancellation (she showed me when I came in). My husband tried something similar with another provider’s staff and they said that for whatever reason, people tend to cancel appointments for the next week the Friday before so that was a good day to call to see if there had been a cancellation. Good luck.
posted by kat518 at 7:29 AM on August 5, 2023 [4 favorites]