New here - how to figure out best care plan?

[halfpint]

My son qualified for an IEP this year in pre-k. They say they don't diagnose, which I totally understand, and they recommend seeing his pediatrician. I know his pediatrician doesn't specialize in behavioral concerns, so we call to see if they can give us a recommendation. No, come on in, they say. See your doctor. We go in, and he literally hands us a piece of paper with a bunch of places on it. He circles a couple, and bills us for a visit. I start calling down his list, and most either don't take children as young as B (he's 4), or aren't even taking new patients. I finally found a place that available, and the only person taking new patients is a play therapist - "is that what you're looking for?"  Hell, I don't know. Apparently the play therapist doesn't diagnose, either. 

So...I'm kind of lost about who to see, what to do. I wish there were some kind of case manager or something that could help me tie things together - "hey, your son seems to have trouble with this. Let's get you an occupational therapist, a play therapist and a...whatever". 

Any suggestions to navigate this better? Should his pediatrician be playing more of a role here? I'm a little annoyed that we paid for an office visit to essentially get a $100 piece of paper. Like, I have the internet. I can Google providers. 

A little background - 

He's 4.5. We've had a ton of change this year, we moved, I had a baby in November. A lot of his issues seemed to escalate with starting public school this fall. So especially the last year or so, he's had trouble following simple routines and staying on task. His IEP focused on that, as well as fine motor and some academics (until basically this week, he couldn't even come close to writing his name, letters, shapes, and couldn't use scissors). He also doesn't play with kids. He plays adjacent to kids. He seems to have a lot of anxiety around being around kids and crowds. Like being in crowded places, you can just see his body language change, he gets a little panicked at first. He doesn't like to leave the house. He refuses to wear shorts - like, he hides them if we try to get him to wear them. He chews his fingernails and fingers until they bleed. Loud noises send him into a panic. 

I just want some tools for helping him cope, and helping us cope. We can't go through life never taking him out of the house, and I want him to be able to form relationships and make friends. And of course succeed in school, but I think he'll get there. He seems very smart, but he gets almost anxious about trying new things. 

[wildfloweragain]

In our area, people go to one of two Developmental and Behavioral Pediatric places. Can you Google those words in your area? Specifically, people from our area go to Rochester, NY (even those of us who done live in that city but it is near-ish.) One of the places we have is the Kirsch Center at Strong hospital. I bet if you even call them, they'd have a resource for you in your area. After an evaluation there are usually a lot more answers and resources. But there is usually at least a 6 month wait at this specific place at least. Our other "local" place is through Rochester General Hospital.

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[waverly]

Most people go through a developmental pediatrician for a diagnosis.

They can sometimes have long waits, so I don’t see a harm in going to a therapist for his anxiety and an occupational therapist for sensory or writing in the meantime, but yes they won’t always or usually diagnose.

I think some have had help from a child psychologist but I don’t know what tests they will do/ won’t do...

[funchicken]

You will probably need to see a couple of different specialists. Sensory issues and a fine motor delay can be assessed and diagnosed by an occupational therapist. My older DD had similar issues with fine motor skills when she was your DS's age. I would also want to see a developmental pediatrician--they can have long waitlists, though.

[auntie]

Given that list of concerns, a developmental pediatrician sounds like the best place to start. IME, gen'l practice pedis aren't always useful for behavioral and subtle developmental concerns- they see your child in the context of a 10 minute well check or sick.

A dev pedi can help determine if this is one thing- like a sensory issue or ADHD or if all the pieces come together under something like ASD. Then they can help you find the right professionals to deal with his kind of presentation of whatever is going on. A good dev ped can also be a great resource for vetting an IEP to make sure DS is getting the services and placement at school that are appropriate for his needs.


It can take 6-9 months to get an appointment with a good dev pedi.

[akafred]

I agree that given his young age and the list of concerns that a developmental pediatrician is probably your next step, but since appointments can take several months, I would go ahead and get an eval from an OT while you wait. ETA most of the time dev pedis don't do the OT/sensory piece and will likely order an OT eval anyway. But the OT is only going to address the sensory and fine motor issues, not the rest of the concerns.

[funchicken]

Also, hugs to you halfpint, most of us have been in a situation similar to yours where we're trying to figure out where to start. The waitlists can be really discouraging, and we heard a lot of "she'll outgrow it" from our pediatrician back in the early days. It's great that he has an IEP in place already--is he starting kindergarten next year? Do you have a support system in place for yourself? Sometimes receiving the results of evaluations can be stressful. When DD1 was first evaluated by an OT at age 4, and we found out that her fine motor skills were in the 1st %tile, it was a shock. Neither my DH and I, nor her teachers realized how far behind her skills were.

Self-care and having support can help keep you feel a little less down on the bad days.

[sahara78]

I was in your place last year. DD’s pediatrician gave us a referral to a developmental clinic at our state’s only medical school. Prior to giving the referral, she did suggest that DD was “just shy”. Thank goodness I still pushed for the referral, as I knew there was more to it.

We did take DD to a private psychologist ahead of the developmental pedi appointment. I wanted to get DD in therapy, as her symptoms seemed to be getting worse. We paid OOP, but it was worth it to me.

I was lucky that the developmental clinic opened a satellite clinic in my city shortly before we were referred, which cut down on our wait (7 months). We met with a developmental pediatrician, speech therapist & OT. Both the psychologist & dev pedi evaluations gave the same ASD diagnosis.

What IEP classification does your DS have? Just curious, as he doesn’t have a diagnosis. Good luck!

[halfpint]

May 29, 2018 9:49:12 GMT -5 sahara78 said:

I was in your place last year. DD’s pediatrician gave us a referral to a developmental clinic at our state’s only medical school. Prior to giving the referral, she did suggest that DD was “just shy”. Thank goodness I still pushed for the referral, as I knew there was more to it.

We did take DD to a private psychologist ahead of the developmental pedi appointment. I wanted to get DD in therapy, as her symptoms seemed to be getting worse. We paid OOP, but it was worth it to me.

I was lucky that the developmental clinic opened a satellite clinic in my city shortly before we were referred, which cut down on our wait (7 months). We met with a developmental pediatrician, speech therapist & OT. Both the psychologist & dev pedi evaluations gave the same ASD diagnosis.

What IEP classification does your DS have? Just curious, as he doesn’t have a diagnosis. Good luck!

I'm not sure? He qualified for academic, behavioral, and fine motor. 

[kitty]

We are in a similar situation and we took our son to our city's hospital affiliated child study center, where they did lots of different assessments including an autism screen and a school observation. Simultaneously, we began private therapy with a psychologist who does play therapy with young children. The play therapist had us do a BASC, which showed clinically significant anxiety and at risk for depression. This was at age 3.75.

My DS's IEP is just under developmental delays. In my state they can use that designation for a variety is issues up to age 6 so they don't "need" a more specific diagnosis. Once my son turns 6, if he still needs an IEP he will need to be classified as emotional disturbance or he can move to a 504 plan for his anxiety.

[auntie]

May 29, 2018 10:30:51 GMT -5 halfpint said:

May 29, 2018 9:49:12 GMT -5 sahara78 said:

What IEP classification does your DS have? Just curious, as he doesn’t have a diagnosis. Good luck!

I'm not sure? He qualified for academic, behavioral, and fine motor. 

You need to know this. It's in the document you signed. 

While educational need should drive services, the IEP classification will provide the context in which those working with your child will view him and his potential. You want to make sure it is accurate and reflective of the areas in which he needs supports and interventions. Sometimes having one classification over another will help free up additional services. 

Often in a preschool setting, a district will go with a catch-all like "Developmental Delay". Most states will allow that classification until age 6, some as late as age 8. 

[agedsubaru]

Devlopmental pedi, OT for sensory processing disorder, and behavioral psychology for behaviors. if there are behaviors, dev pedi will recommend. You can start now.
Neuropsych evaluation after you see developmental pedi to prep for kindergarten or 1sr grade.