OP, you need to go back to your neurologist and the doctor that have you the GDD diagnosis. A GDD diagnosis is often a placeholder for an intellectual disability. Often but not always. Regardless, that is part of what they’re seeing. You won’t know this until you can test IQ definitively. Regardless it seems like this wasn’t explained to you. You need a full understanding to be able to help her. You will likely do many assessments along the way, but the IQ test is going to be the big one.

I am happy to hear that your child hasn't had a seizure in over a year. That's great that you've gotten it under control.

Anonymous wrote:OP, she does have a diagnosis that explains what is going on. She has a GDD diagnosis and epilepsy and these sound like cognitive issues. She likely is not following along. You need genetic testing at some point. But at this point, I agree, you will not know much until you get an IQ test. My son with a low average IQ and epilepsy had similar issues. They are different than autism and that’s what the doctors were telling you. It tracks. I’d stop trying to get a more pin point diagnosis because you may never, and start intensive speech and remedial learning. You may be looking at special school.

I am a PP who was suggesting another evaluation. You seem to know what you’re talking about and I don’t disagree with you about the focus on diagnosis not being always worth it. However I do think it would help OP have an evaluation that really set out the likely educational impact of the delays and the supports needed to set the child up for success in Kindergarten. Maybe if OP posts the location we can help. I say this because I think entering K with a strong IEP was a HUGE factor in ensuring my child’s success in learning well and transitioning to school. For OP’s child we want to make sure that she’s getting all the OT etc to have a head start on writing, that we know the best strategies to help the child sit an attend to lessons and so forth.

People talk a lot about “early intervention” as some kind of magic, like it’s a medicine you give at a certain time in a certain window. But I’ve come to understand it more as building the necessary scaffold so a child’s challenges don’t block them from learning. Kindergarten is a huge learning opportunity so you want to know as much as possible about how the child learns & what they need on day 1. If OP’s child is going to learn some fundamental skills more slowly (like fine motor) then you need to get a head start so they don’t get in the way!

Anonymous wrote:

Anonymous wrote:Knowing about the seizures is an important part of the puzzle as they can cause regression which takes some time to recover from. Your speech therapist should be able to give you ways to work on these skills at home.

Op here. She hasn’t had a seizure in over a year, though.

I’ll see if I can connect with the speech therapist to better understand what we can do at home.

She could be having them in her sleep or having ones you can’t see. It’s still a very important piece of this puzzle. Seizures are a symptom of an abnormal brain and often go along with cognitive issues.

Anonymous wrote:Knowing about the seizures is an important part of the puzzle as they can cause regression which takes some time to recover from. Your speech therapist should be able to give you ways to work on these skills at home.

Op here. She hasn’t had a seizure in over a year, though.

I’ll see if I can connect with the speech therapist to better understand what we can do at home.

Knowing about the seizures is an important part of the puzzle as they can cause regression which takes some time to recover from. Your speech therapist should be able to give you ways to work on these skills at home.

Anonymous wrote:Are the only services she receives speech therapy or does she have special education teachers working with her as well? Hearing about the epilepsy makes me change my mind about the need for additional testing at school if she doesn't currently have services beyond speech therapy. They can do this additional testing from the public school you just need to ask.

Op here. She only gets speech. She’s in a mainstream pre-k classroom, but it’s only a few hours a day a few days a week.

I’ll ask about getting more testing or services.

Are the only services she receives speech therapy or does she have special education teachers working with her as well? Hearing about the epilepsy makes me change my mind about the need for additional testing at school if she doesn't currently have services beyond speech therapy. They can do this additional testing from the public school you just need to ask.

Op, as she has epilepsy, they may be flagging concerns about absence seizures or about the medication. Talk to your therapist and ask her if there are things you should tell your neurologist.

Anonymous wrote:OP, she does have a diagnosis that explains what is going on. She has a GDD diagnosis and epilepsy and these sound like cognitive issues. She likely is not following along. You need genetic testing at some point. But at this point, I agree, you will not know much until you get an IQ test. My son with a low average IQ and epilepsy had similar issues. They are different than autism and that’s what the doctors were telling you. It tracks. I’d stop trying to get a more pin point diagnosis because you may never, and start intensive speech and remedial learning. You may be looking at special school.

And that’s what the therapist is getting at. There is a cognitive issue. It’s likely also a receptive language issue. It may improve. It may not. But it’s unlikely autism and you won’t know the cognitive issues until you can do complete testing. Usually around 8.