Which provider to see next - DCD / attention / speech issues in 4.5 yo

[Anonymous]

My son is starting Kindergarten in August. He has an IEP so cannot redshirt and continue his IEP services. Next year, he will get 30 mins per day of SPED pull out, and then either 20-30 minutes per day of speech / adapted PE / OT pull outs. He has motor, cognitive, and speech delay.

Our first specialist we saw was developmental pediatrician (Feb 2023). She ruled out autism and referred to either pediatric neurology or pediatric PM&R. We live in a small city in the midwest, and I know and ruled out the pediatric neurologist, so we went to PM&R in June 2023. She did not think he had muscular dystrophy or CP (it would be hypotonic CP) but asked us to come back in a year to make sure he was progressing adequately. She suggested we do a microarray, which we still have in our closet, mostly out of inertia and because (per genetics) it probably won't reveal anything.

We are going back to PM&R in June, but I am feeling confident that CP and muscular dystrophy will be definitively ruled out, since he has advanced so much physically and has much more energy and strength. He will not need PT in K and actually rides a bike now without training wheels. His big issues now are fine motor, speech, and attention span / memory/ retention of information. For example, we will play a game with his older siblings where we go in a circle stating the alphabet. Most of the times, let's say he goes third, instead of C he will say 16 or daffodil for example. But then about a quarter of the time, he says the appropriate letter each round and we make it all the way to Z. Same thing with 1-1 correspondence of objects. Sometimes he can identify up to 10 cars in a row but other times can't focus on counting 3 cars in a pile. And we are very careful only to try these things when he is receptive, rested, and for brief intervals. He is very chatty and will be talking about his day at school and halfway through - will start crying because he doesn't remember what he was trying to say.

So - who should I see next? Since I have established care with the local "Autism and Neurodevelopment" practice, I can schedule a follow up with developmental ped or neuropsychologist, but I don't know what they would offer. Should I make the drive (2 hours) to see an out of network neurologist? Any other providers I am overlooking?

[Anonymous]

Comprehensive language evaluation and either dev ped or neuropsych to look at things other than autism.

[Anonymous]

Is 30 minutes a day of specialized instruction enough? From what you're describing, I'd want more. At least 60 minutes of pull out and another 60 minutes of push in, plus the related services.

[Anonymous]

This is OP. I have the same worries about his SPED minutes but also trust his IEP team (other than the district rep but she wasn't there!). We just had a very collaborative IEP meeting but now I am second guessing again.

As to the suggestion for a comprehensive language evaluation - who would perform that?

As to the suggestion for a dev ped or neuropsych - how would their info impact what we are actually doing? If he is already getting OT, ST, etc - what would those dxes provide?

[Anonymous]

PS thanks all!

[Anonymous]

Anonymous wrote:This is OP. I have the same worries about his SPED minutes but also trust his IEP team (other than the district rep but she wasn't there!). We just had a very collaborative IEP meeting but now I am second guessing again.

As to the suggestion for a comprehensive language evaluation - who would perform that?

As to the suggestion for a dev ped or neuropsych - how would their info impact what we are actually doing? If he is already getting OT, ST, etc - what would those dxes provide?

Trusting the team is fine, but no one has his best interests at heart like you do. Is he close enough to grade level that he can work as independently as the other kids for the whole day minus 30 minutes? If you have cognitive concerns, I doubt it. And if he has trouble with attention and retention, he is unlikely to learn well without being pulled out for re-teaching in a small group setting.

One thing the dev ped or neuropsych can do is give an opinion about what services he needs. They see a lot of kids similar to yours and can give an opinion about whether he is likely to make progress with only 30 minutes a day. And they don't have the competing interests that the school has.

[Anonymous]

Oh, and an independent speech therapist can do the evaluation. Has the school system done a speech and language evaluation? Can you afford to pay out of pocket?

[Anonymous]

Thanks. He sees a private speech therapist so I will ask her what she thinks. I do think he will be able to stay on task in K, but the question will be whether he gets anything out of it academically (as opposed to just going through the motions). He will also get push in services as needed for certain activities (but not delineated minutes), plus pull outs for therapists. He's got great social skills and is very creative at compensating for his deficits- but that will only work for so long.

[Anonymous]

My DS is pretty similar. ADHD meds have been life changing.

[Anonymous]

18:29 - what type of provider prescribed the meds?

[Anonymous]

You are wrong that you cannot redshirt with an IEP. WHo said that? What district? Everyone in my circle did it and the IEP stayed in place and we got services from the district.

[Anonymous]

PP here again. I also think you should see a geneticist. They are incredible doctors with a broad knowledge of therapies and providers. For us it was key.

[Anonymous]

Understand with speech, often it is slow and steady and some kids don't improve till mid-later elementary or slightly later. I would do speech therapy a few times a week and maybe an OT. I wouldn't redshirt. I wouldn't rush to get another evaluation just yet and I'd put the money into more speech.

[Anonymous]

Anonymous wrote:You are wrong that you cannot redshirt with an IEP. WHo said that? What district? Everyone in my circle did it and the IEP stayed in place and we got services from the district.

NP. I'm in FCPS. My oldest and youngest have IEPs. The oldest was in K and the youngest was in PS and the IEP had him attending an FCPS special ed preschool. I had hoped to redshirt my youngest so he could delay entering K in one year. I was working with an excellent and experienced advocate who had also helped with my oldest. When I broached it with her, she said there was no way FCPS would agree to that and it was such a lost cause that she wouldn't work on it. As the OP noted, the school's position was that the IEP would allow him to access the grade level curricula and redshirting was not needed. When I brought it up with the school team, they said I could redshirt DS but that he could not spend that year in the special ed preschool and I'd have to pay for private.

It could be that a child whose needs were not as significant as mine and not eligible for the special ed preschool could continue to receive services. Is that what you and your circle had?

[Anonymous]

OP here- Re redshirting: My son cannot attend special ed preschool next year. He would continue to be eligible for services, but they would be less robust and we would have to take him ourselves (rather than get bussing or itinerant services). He would have to go to private school or be homeschooled. We are in the midwest.

We are resuming private OT this summer. He somehow graduated OT last spring and we switched to horseback riding as his motor therapy (in addition to speech therapy). But now he is eligible again and we will work on K readiness.