What next? Late talker, EI eval ..

[cagey]

Hi there.
I've not been on in a long, long while. And I didn't used to spend a lot of time here but I've found myself wondering if any of you might have advice.
My 27 month old daughter is behind on her expressive speech. She's been behind her whole life, but my DS (now 5.5 and a chatterbox) was a bit late as well so the alarm bells didn't really ring until recently.

I got her an EI eval last week.  She did not qualify. They said if she doesn't have an "explosion" in 3 months to call them, because her current level (19-months) doesn't qualify her now but would in 3 months.

Basically, while she's delayed with expressive speech, they said she is actually ahead in the other areas (including receptive speech at a 3 year old level). 

I know she's a clever girl. Fearless, funny, physically very adept (she's a BIG girl - 99th% height and 87th% weight). But I can't relax about this because I don't feel like the speech pathologist was listening to me.

I told them she has 9 words (mama, dada, bubba, dog, ball, yeah, hi, yaya (her nanny), uh-oh) and some animal sounds, but weird ones ("ah-now" instead of meow, she'll howl for a wolf and growl for a bear or dinosaur, and 'hoo hoo' for an owl - nothing for dog, duck, cow...etc). SP told me that her animal sounds counted as words and so did "whoo hoo!" which she says in celebration and that "You need to start a list because I'm sure she has more."  Guys. She doesn't have any more. I started my list weeks ago and am racking my brain here.

I read the book by Stephen Camarata "Late-Talking Children" and I'm tempted to call his clinic and travel across the country for an eval, but I don't want to be crazy.  

Is patience the answer here? Do I just suck it up? Do I find another SLP? Get on a wait list for a DP now (because it's MONTHS and MONTHS wait here)? Fly to Nashville and beg Dr. Camarata to see her? Or just wait and see for three months.  
 
It's hard because she's SO BIG and so good a physical things - climbing and soccer etc... that people expect so much of her and I feel like I am always getting looks from the other parents in the playgroups.  Frankly her eye contact isn't what her brother's was (but I asked the EI team point-blank about that and they said it was fine).

We did get an appt with our son's ENT but it's not until jan. She really hasn't had a ton of ear infections and she passed her infant hearing screen, but I guess I will always equate DS language explosion to us (finally) getting him tubes... so maybe I am grasping at straws.

Please forgive me if this makes me sound like a paranoid mom who has no business posting here. I know that we are very fortunate.  It's just that they totally pooh-poohed my telling them she says 9 words and it's not like those 9 words are even that different (mama, dada, bubba, yaya) ... I'm trying to let the nagging feeling go but I'm not succeeding. My mom needling me on it do not help.

I'd be grateful for your advice.  

[akafred]

I really don't have any experience with speech delays, but EI does not have a monopoly on SLPs. If you are really concerned you can seek out a private evaluation and potentially private speech therapy. Depending on your insurance coverage, some or all of it may be covered or you may have to pay out of pocket (which is still cheaper than a cross country trip! Although Nashville is beautiful and you should def come visit sometime).

We do private OT and the center we go to also does ST. Our OT is fully covered (DD has Medicaid because she was adopted from foster care). A friend of mine does private ST for her son who has expressive-receptive language delay. I believe this friend has good coverage also through TriCare military insurance.

[Deleted]

No need to fly across the country. I would probably wait the 3 months or do a private practice or medical practice speech therapist. Check your insurance coverages first.

[akafred]

Oh, and if you have concerns beyond speech then I would say yes, go ahead and get on the wait list for a DP.

[lucilleaustero]

We had our son evaluated by EI at 25 months due to expressive language delay. In our county, they do not factor in the range between expressive and receptive, rather, they average them together, so he technically did not qualify. His expressive was at a 15 month old level and his receptive was was high as they were able to measure, which was 36 months. Still, the evaluator spent a lot of time on the phone with the EI coodinator convincing her to approve since my son was punishing himself when we did not understand his jargon and got very upset that he could not express himself. The evaluator convinced the coordinator.

But, we had prepared for him not getting EI, since it seemed likely he that he would not. We were told that our county rarely approves services for a straight speech delay in the absence of any other red flags, and usually only does so when the evaluator takes the time to make the case. Unfortunately, sometimes it is just who you get that determines if your kids gets services.

See what your insurance covers. Go the private route until your next eval through the county. Going somewhere else to get an evaluation is likely a waste of time. In my county, only a select county-approved number of SLPs are given privileges to evaluate and they will not recognize an evaluation done by someone not on the list. Your county may be the same.

[lucilleaustero]

And as far as the words, sounds with intent are key. Even if it does not sound close tot he word, if she is saying the same sound for the same object every time, that is a word for her. That is typical for kids with speech delays. For example, my son recently started saying 'Mickey Mouse', but he says it as 'mi-mi-mo', but the SLP is counting that.

[KC thepouchh8r]

I would definitely look into some private speech therapy while you wait three months for another EI eval. I would probably pass on a DP for the time being unless there were some other concerns like a delay in another area of development and/or sensory concerns.


I also think it's ridiculous that 9 words for a child over two doesn't qualify. We qualified for speech through EI with 8 words at 18 months. 10 words was the lowest amount you could to not qualify as delayed enough for speech services. I would think 8 words would put a child at the 12-15 month mark for expressive speech, not 19 months. If you have another EI agency local, you may want to call them, explain and see what they say.

[cagey]

You guys! Thank you so much. You've both made me feel like I'm not crazy to think that something is off, but also talked me out of the full panic rush to extremes. That is sort of amazing and totally awesome.

I'm going to check with insurance and look into a private eval locally.

I don't really have any other major concerns. She's wildly independent and loving and does pretend play and helps with dressing etc, etc... so I will wait on the DP outreach

Thanks lucilleaustero for the clarity on what's a "word" ... We have now put a list on the fridge that my nanny and I are committed to keeping up (it's still unchanged though if you count the animal sounds we are at 14)

I appreciate this so much.. SO MUCh.

[brachysira]

Well, you've got a plan, but I just want to commiserate. My son is the same age and shorter but heavier, and he keeps up with the big kids motor-wise. He talks all the time with tons of actions so we get his meaning but we can't understand him unless he's holding the object he's talking about. It is irritating to do activities and have him seem so much younger than kids his age because he seems to just babble and it also sucks for him because the other kids don't understand him. My son HAS had a ton of ear infections and we had a hearing test but he only failed (probably) because he had an ear infection which he seems to have for about 4 months in the winter and then not again until the next winter. We are not expected to qualify for EI and our pedi says we should wait and see if it gets better, but the hearing doctor thought we should get help sooner. Good luck with the private route--it's what we'll probably have to do and since you'll probably do it first, keep us informed.

[cam]

Welcome. I agree with the advice given and think your plan sounds good. You certainly are just as welcome on this board as any of us, so feel free to keep posting, participate, and give us updates. My son has a speech delay, in addition to other issues, and we went the private ST route for various reasons.

[cagey]

Dec 8, 2016 14:31:40 GMT -5 brachysira said:

Well, you've got a plan, but I just want to commiserate. My son is the same age and shorter but heavier, and he keeps up with the big kids motor-wise. He talks all the time with tons of actions so we get his meaning but we can't understand him unless he's holding the object he's talking about. It is irritating to do activities and have him seem so much younger than kids his age because he seems to just babble and it also sucks for him because the other kids don't understand him. My son HAS had a ton of ear infections and we had a hearing test but he only failed (probably) because he had an ear infection which he seems to have for about 4 months in the winter and then not again until the next winter. We are not expected to qualify for EI and our pedi says we should wait and see if it gets better, but the hearing doctor thought we should get help sooner. Good luck with the private route--it's what we'll probably have to do and since you'll probably do it first, keep us informed.

*** I hope this way tags you, i really don't know how this system works ***

So.. my son was a late-ish talker too (thus why I really didn't focus on my daughter) and he sounds A LOT like your son. LIKE: A LOT. Did they do tympanic tests on him? My son was in and out of EIs . DH didn't want to get him tubes (we tried lots of things before that, it's a long story which I'm happy to share, but it's not that interesting) but the ENT showed us that his tympanic tests 2 weeks apart one with an EI and one without WERE THE SAME. Because even though the "infection" was gone, the fluid was never draining. So whether he had an infection or not everything he heard sounded as it would to you and me as though someone were speaking underwater. When we finally got him tubes it CHANGED EVERYTHING. EVERY.THING. in a weekend.  It was THAT dramatic. 

Anyway, I say this to you just because your son may have the same thing. He may have fluid in there ALL THE TIME that only gets infected some times.  FWIW my son never really tugged at ears and never really ran high fevers... 

Also, FWIW we had to go through multiple ENTs (also more related to tonsils than EI) so maybe another opinion? The one we went with did auditory testing in the office so it was easy for us to get a baseline on what the real issue was...

[brachysira]

cagey, thanks!

I have heard from a number of people that tubes = immediate talker. The hearing doctor wondered why we didn't have them, but our pedi's view was that since he was only a winter ear infection child, he could do without them. Her belief is also that he's just having trouble forming words since his vocabulary is great and he talks a lot but he just can't be understood unless we already know what he's going to say. He's had what I think are the tympanic tests once last year and once this year. Last year was pretty early on and they thought he still had an infection. This year's showed fluid in only one ear and a follow up check with a regular eye view showed that it was nearly gone as far as she could tell. But our pedi is sure we will qualify for Early On now since I said I can't ever understand him and so I guess we'll see where that goes. DD will have her 4 year appt in a few weeks, and our doctor always checks the other child's ears too if we've been sick, so we'll have more info then and after our EO tests. She's always said we could get tubes if we wanted, but I just hate to do it. We have only one big ENT place here and when my son went for his lyringomalacia at a few months old, we had to wait for over 3 hours even though we had an early appointment and then they didn't have the gel for the scope and just did it without and he screamed, and my pedi thinks that it's a great place to pick up germs since there's a 300 person waiting room, so I really hate to go in for a consult. The hearing person is not in this office and it's much more pleasant.

[numbbears]

Welcome. DS had tubes put in and a good ABR around 2 and I had hoped for an instant talker, but it didn't happen. He had the word "go" and a fluctuating number of animal sounds before he ever said anything else after he turned 3.

I would probably wait the three months, but if I were really concerned that they might not listen, I might see what a local private ST therapy eval said (and sometimes those waitlist are really long too). If it works with how your EI works and insurance, sometimes you can get both. DS was in private first then they recommended we contact EI to get additional services. Good luck.

[mrsbuttinski]

Welcome to the board- feel free to stick around.

My only real advice is to trust your gut; a mother's gut is seldom wrong.

I do hear you on the extra challenge of having a child who looks older but is delayed around skills. It can be awkward when people try to engage when you are in public.