Update: Intro and developmental delays

staceyemd

Update: So we saw the pediatrician and she said she "definitely" thought DS was on the spectrum, but she was also very optimistic for his future.
We got a referral to a developmental ped and are waiting to hear back. The regular ped didn't think we would have to wait more than a month to get in, so that's good.
We also were referred to speech and OT. First speech appt is in-home next week. Can't wait to get started! Thanks again for all the good advice.
Also: We managed to get through library story time with minimal fits and wandering off! It's the little victories.
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Hi all, I'm a mom of two (DS is 3, DD is 8 weeks) and recently came across this board (also a longtime April 2014 lurker). DS was recently screened by our public school system and was found to have delays in speech, fine and gross motor and adaptive behavior. He qualified for the special Ed program and got an IEP but won't start until the fall. He has not been diagnosed with any specific disorder but I have been reading up on PDD-NOS and wonder if that's it. My question is, what can I do next? School is 2.5 months away, and it's shaping up to be a long summer. Do I need to take him to the ped and get a referral to a specialist? There is a Brain Balance in my city; can I just call them up, and do they even take insurance? With a newborn on my hands all day, I'm already at my wit's end and it's barely June. I just want to have a conversation with my son without him responding about something random he read in a book or saw on TV (echolalia) or go somewhere new without a fall-on-the-ground tantrum. Or watching him walk on tiptoe or cock his
head. Or changing stinky diapers (he's vehemently against potty-training). i could go on. Or am I worried for nothing- is a delay just a delay sometimes? Sorry this was so long. I just don't know what to do or if we need to do anything. Any advice or thoughts are appreciated. TIA

hopecounts

Welcome

I would get a referral to a developmental pediatrician and get a work up and get some firm information from them. 

PDD-NOS falls under the ASD umbrella and will generally respond to similar therapy approaches, so I would recommend ABA or a similar type of therapy over something like Brain Balance. especially since it sounds like he has a good bit going on behaviorally and ABA is wonderful at addressing behavioral issues. 

Given the extent of all that's going on I think an evaluation is worth the time and money to get a better grasp on what is going on. 

bumpuser511563

Welcome to our board!

If you can get a referral from your pediatrician for a developmental pediatrician or psychologist to get started on a evaluation. It can be months to be evaluated but you could request to be called if there is a cancellation.

In the mean time you could easily get referrals for speech, ot and pt from the pediatrician. The developmental pediatrician or psychologist can give a referral for ABA services. (I am not sure a pediatrician can give a referral for ABA, you can ask).

My son has PDD-NOS under the DSM4. It is all autism under the DSM5.

macchiatto

Welcome to our board! I agree with pp's advice to find a developmental pediatrician and also see if you can get referrals for private therapies from your pediatrician in the meantime. We've done EI, private and school-based therapies and my son really got the most out of private therapies compared to ones through the school system (though of course we were thankful for both). 

And yes, sometimes a delay doesn't have an underlying diagnosis, though it may. My son has been in therapies for 2.5 years now. He seems to have a rotating list of dx that fall on and off devel pedi's reports from visit to visit. My little guy has had/is still getting PT, OT, feeding therapy and social skills help but he doesn't have firm Dx right now beyond hypotonia, SPD and developmental delays. He may or may not also have anxiety, developmental coordination disorder, and doesn't seem to be quite on the spectrum yet although he is close and may end up with a Dx in a year or two as expectations get higher.

ToastieSimons

Welcome!

Princess_Lily

Great advice already given. I just wanted to say hello & welcome.

staceyemd

-auntie- said:

staceyemd said:

Hi all, I'm a mom of two (DS is 3, DD is 8 weeks) and recently came across this board (also a longtime April 2014 lurker). DS was recently screened by our public school system and was found to have delays in speech, fine and gross motor and adaptive behavior.

Was he screened or evaluated? 

Screening determines if a child is "at risk" or has some delays, and evaluation is meant to identify differences that have an educational impact and quantify how impacted the child is by them.

It was probably an eval; do you recall what scales were used to determine eligibility for special education services? Did he transition out of a Birth to 3 program or was contact with the district your first eval/screening?

First screened, which led to an eval. They used the DP-3 checklist. Also RED-MEEGS, if that means anything. He aged out of the birth-to-3 program in March. He was given the 3-year ASQ and didn't do well, so we were referred to the elementary school where they evaluated him in May. 

  He qualified for the special Ed program and got an IEP but won't start until the fall. He has not been diagnosed with any specific disorder but I have been reading up on PDD-NOS and wonder if that's it.

Do you know precisely what sort of classroom he'll be in and what the focus of it is? Is it an integrated classroom with kids who have a range of educational differences? Or is it a speech and language support class or an inclusion class that has typically developing peer models? 

His teacher said most of the kids in the class are "just like him," which I think was meant to reassure me that they were not all severely delayed or something. There are teachers' kids in the class who are at the normal level of development, too. His IEP says he will get "direct instruction in preacademic skills" 6 hours a week and 90 mins of speech therapy.

If you're reading about PDD-Nos, you're reading dated materials. That, said, there are a lot of good books out there written pre-DSM-5. When the DSM was revised a few years ago, this dx was faded out.The vast majority of people who met the diagnostic criteria for PDD-Nos also meet the DSM-5 criteria for Autism Spectrum Disorder.  While schools can't offer you a medical dx, they can offer an educational one. Given your description of the issues you are seeing, I wonder if he should have been evaluated for ASD. Under IDEA, an evaluation is supposed to address "all suspected disabilities". Did they test for ASD? Do you recall how he did when he was given the M-CHAT as a toddler (often done at the 18, 24, 30 month appointments)

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

He did take the M-CHAT and did fine on it at 18 and 24 but not so well at 30. There were some areas of concern but it didn't lead to any further evaluation.

My question is, what can I do next? School is 2.5 months away, and it's shaping up to be a long summer.

Districts should offer a summer program- ESY for some kids with IEPs. This is something for you to be mindful of next school year. Talk to the teachers and therapists about documenting regression over school breaks.

Ours doesn't offer anything over the summer.

 Do I need to take him to the ped and get a referral to a specialist? 

I would. It seems like you district didn't do as complete an eval as they should have. Did they classify him on his IEP under "Developmental Delay"?

 IEP Primary Disability is 15-Developmental Delays. Suspected disability is 10-Specific Learning Disability. No idea what 10 or 15 mean.

I'd ask your PCP for a referral to a developmental pedi. This appointment could take some time- the best people where I live have 6-9 month wait lists. Since you insurance probably won't cover multiple eval in a year, this is a time when you need to see the best available person.

There is a Brain Balance in my city; can I just call them up, and do they even take insurance? 

I wouldn't waste my money or my son's time on one of these proprietary franchise programs. While I don't think it would harm your child, it would be better to focus at this point on a program with more robust research and results behind it. This is the sort of thing you can add after you have a plan like ABA, DIR/Floortime or ESDM.

With a newborn on my hands all day, I'm already at my wit's end and it's barely June.

I just want to have a conversation with my son without him responding about something random he read in a book or saw on TV (echolalia) or go somewhere new without a fall-on-the-ground tantrum. Or watching him walk on tiptoe or cock his head. Or changing stinky diapers (he's vehemently against potty-training). i could go on. Or am I worried for nothing- is a delay just a delay sometimes?

Knowing what I know now, I'd be scared shitless. You've described a kid on spectrum pretty well. Preschoolers are a tough and quirky crowd, but it's not supposed to be this hard. Toe walking and echolalia are not actually "delays" they're dysfunctional behaviors. 

A lot of kids with ASD are later to train. This is something ABA can help you tackle. Many of the higher functioning kids train closer to 3 1/2 or 4; kids with "less mild" issues can be older than that. If he's a young 3, he may not be ready yet. If he'll be nearly four going into preschool you might seek professional help around this.

He's 3yrs, 3 mos. The tiptoe isn't constant, FWIW. He is good with letters and numbers, is bright and curious and understands feelings (e.g. while watching a new show and someone is crying, he'll say "aw, sad"). Gives hugs, waves bye, can hit a ball off a tee, pretends to play trumpet and talk on the phone. 

My husband thinks he'll grow out of it and we should have expected he would have delays since DS has spent the vast majority of his childhood around his parents, not peers. He went 2x week to preschool last year and flourished. I'm hoping that with 3 half days/wk spec ed and 2 full days/wk of "regular" preschool (at a different site- we signed him up before his eval) he will benefit from being around his peers. Plus playdates and the church nursery. DH is OK with getting him looked at further, but I think he's in a bit of denial, too.

Thank you so much for the detailed response. I'll call the pedi today and see when she can look at him.

 Sorry this was so long. I just don't know what to do or if we need to do anything. Any advice or thoughts are appreciated. TIA

hopecounts

He's 3yrs, 3 mos. The tiptoe isn't constant, FWIW. He is good with letters and numbers, is bright and curious and understands feelings (e.g. while watching a new show and someone is crying, he'll say "aw, sad"). Gives hugs, waves bye, can hit a ball off a tee, pretends to play trumpet and talk on the phone. 

My husband thinks he'll grow out of it and we should have expected he would have delays since DS has spent the vast majority of his childhood around his parents, not peers. He went 2x week to preschool last year and flourished. I'm hoping that with 3 half days/wk spec ed and 2 full days/wk of "regular" preschool (at a different site- we signed him up before his eval) he will benefit from being around his peers. Plus playdates and the church nursery. DH is OK with getting him looked at further, but I think he's in a bit of denial, too.

Thank you so much for the detailed response. I'll call the pedi today and see when she can look at him.

 Sorry this was so long. I just don't know what to do or if we need to do anything. Any advice or thoughts are appreciated. TIA

The bolded describes my DD who has ASD, except she doesn't tip toe walk. 

I'd get a complete eval and pursue ABA/other treatments in the interim, worst case scenario he isn't on the spectrum and he did some therapy that will help his behavior. 

Salemkitty13

DP3 stands for developmental profile third edition. We use it as a back up to the Battelle in our district. I looked up the red meegs because I had never heard of it. It appears to be a form your state uses. 

I agree with @auntie that it wasn't a robust evaluation. However, the services seem ok. 

If you are concerned about ASD call the school back and ask them to test for ASD. When we get a preschooler from EI we do not automatically test for ASD only if there is reason to suspect. (Im not saying this is right or wrong just sharing what the system I work for does) so if nothing comes up during the transition meeting we might not test for ASD. However sometimes when we are doing the Battelle or the Peabody the examiners start to suspect ASD and will then get permission to also do ASD testing.

the numbers in front of the disability areas are for coding purposes. They have to send reports to the state and Feds. They track how many students are being served under which labels. I agree that sld for a preschooler seems odd. Especially since they only gave him one test. As for the developmentally delay label, the purpose of the label is to be able to serve children who may not fit into one of the other requirements due to age. Some tests like IQ tests shouldn't be given when they are that young.

 

The ESY thing always makes me mad. As a teacher (ASD) I always wanted my students as soon as I could get them. And I always wanted them to get ESY. The way this has been explained to me is since the student is new and hasn't had services yet we can't show that they would regress. (ESY is for students who would regress and not be able to recoup in a reasonable time) I always think this is BS!

 Your plan for next year sounds great. I think you are off to a good start

ETA formatting on iPad stinks

staceyemd

Hopping out of the quote box since I'm on mobile (which I am 99 percent of the time)...
@-auntie-‌ Both schools are ok with diapers. I know it could be a while (Pampers only goes up to size 7 though and we're pushing that- eek!) As for the speech plan, I'm not sure of the specifics.
Thank you all for your feedback. This has been a lot to take in and I'm still learning a lot of the acronyms.
We're just starting this journey, and I'm scared to death. It's really overwhelming, especially since autism is so complex and seems to affect each kid in a different way.
I have to keep reminding myself he's still the same little boy he was yesterday and no label will change that. Trying to look for silver linings but it's mostly "at least he can do xyz" or "at least he's not xyz," etc., which only help somewhat.
Plus, I feel guilty about how much thought and time and energy I put into him compared to DD. She's already 8 weeks and I feel like I'm missing her babyhood (although this may be a typical STM thing, who knows).
I'm glad to have found a supportive, knowledgable community. I don't have anyone IRL to talk to about this. I hope to get to know you all and reciprocate the encouragement and support where I can.
P.S. Visit with the regular ped is Monday. Will update.

CaptainSerious

I don't have much to add, but just wanted to share that having some form of extended school year (summer) services I'd a federal requirement for any child that the IEP team determines would substancially regress tover the summer. A school/district is not allowed simply not to have a program.