Please help me be a stronger advocate for DS's speech eval tomorrow

I don't know if I've ever officially introduced myself on this board. DS just turned 2 and currently received OT 3X a week for some sensory issues and attention span related things. I initially called EI when he was 15 months as he had no words at all. Not even mama/dada. He has always babbled a ton but no words and also didn't point. (should disclose that he was completely tongue tied until he had it clipped at the age of 1)

He was not approved for speech at that time which blew my mind since he literallly had zero words and didn't point nor shake or nod his head appropriately. We're in NJ, don't know if that matters. He was evaluated by an SLP and a SpEd teacher. He instead was given OT twice a week for what they recognized as some minor sensory issues and to work on his eye contact/attention span/patience, which they said would help him should he still need speech down the road.

Fast forward to now, DS just turned 2 and still has zero words. Babbles like he's conversing, makes very minimal animal sounds, but still no words. Now he has come leaps and bounds as a result of the OT. I didn't realize how poor his eye contact/attention/frustration level was until now but he's doing awesome and his OT therapist said she'd recommend a speech eval and that now since he's 2 he'll likely be approved. His eval is tmrw, I just got off the phone with his coordinator from the county and she said it's usually pretty standard to start off with only once a week. Once a week?!?!?! He's 2 yrs old and completely nonverbal. He points now and has learned a couple of basic signs but still drags me everywhere to get what he wants. And they would still only give him once a week??

How can this be?? Is this normal where you are or are they just stingy with speech in NJ? What do I need to say to strongly request/politely demand more than once a week? He started out with OT once a week and didn't make any progress for 3 months almost until I requested an increase. He was re-evaluated and given 3X a week and since then is like a whole new kid. I don't want to have to wait 3 months for once a week of speech to have little effect, especially at the age of 2 already, and also since in jersey we pay for this out of pocket, EI isn't free. They keep saying, "he's still so young, don't worry" . Drives me insane. He's 2 and is nonverbal, he needs help. So what do I need to say to show them I mean business with this?

Re: Please help me be a stronger advocate for DS's speech eval tomorrow

IMO he should at least qualify for 2x's a week minimum. I'm not sure how it works in NJ but here on LI if you are not happy with how a meeting is going, you can "table" the meeting and request a parent advocate.

I would mention all the things you are concerned about:
attention span, lack of eye contact, non verbal. But I would emphasize the non-verbal effects (temper tantrums where he is acting out, frustration, your not able to understand him).

Re: Please help me be a stronger advocate for DS's speech eval tomorrow

As a former teacher and a now a mom who has a dd in EI, I can tell you that 1x a week sessions are really ineffective. By the time the therapist gets to 'really know' your son it will be months. During my teaching career, I left the classroom and taught, writer's workshop. There was a class I saw only once a week. The progress didn't compare to the classes I saw 2x and 3x a week. Tell them that it will take so much longer for your son to generalize what he is learning in therapy onto his daily life if he is just getting 1x a week.

You my also look to get a diagnosis for him by an outside professional and help use that diagnosis to get him the adequate services. Even some special ed sessions could help with his speech.

Oh and just like the previous poster mentioned, ask for another meeting if this doesn't go well and mention how you will bring an attorney/advocate. You will see things turn lol

Message edited 2/23/2011 9:59:30 PM.

Re: Please help me be a stronger advocate for DS's speech eval tomorrow

I find that EI is generally stingy with services. I would emphasize to the evaluator frustrations that arise from your son's communication. So if he cries or tantrums when you don't understand him. Also if he gives up and walks away. Those kinds of behaviors are usually taken seriously.

Re: Please help me be a stronger advocate for DS's speech eval tomorrow

I don't really understand the system in NJ. If you are paying out of pocket anyway - can't you just ask for speech 2x a week if you think he needs it? What difference does it make to EI if they aren't paying for it? Do you have to be approved for the # of sessions if you are going through insurance?

I have a friend in NJ who is similarly frustrated because she feels like the whole EI process has been a waste for them since her DS will soon turn 3. She feels like since they have to pay out of pocket anyway, she should have just pursued services privately until he was in the school system.

I would talk to the evaluator about all of your concerns - they include a lot of parent interview information in the evaluations. I would also use the information from the eval when you get it to fight for at least twice a week speech. I would also use the point presented above that once a week sessions will not give him the amount of consistency and reinforcement he will need to progress.

ETA - I think the posters above are confusing EI with CPSE. I don't know that you can "table the meeting" in EI, but you could probably request a meeting with the service coordinator's supervisor if you feel she is being unfair with giving him what he needs.

Message edited 2/24/2011 4:09:45 PM.