Speech problems in 2.5 year old

[*Jen*]

I need some advice especially from those who have dealt speech problems in toddlers

 

My 2.5 year old has had problems with speech and I'm getting the run around from early intervention. He was never one to babble. He is the youngest of 4 and only babbled a little when away from his siblings. The first time he really made more than a cooing sound was when he was 8 months old and away from his siblings for a week. He started to babble more then but not a lot. He continued to barely babble and still made lots of vowel sounds without consonant sounds. At 14 months he was not trying to speak at all. He would point and grunt and very rarely make an effort to make more than cooing type sounds. He occasionally got out what sounded more like a word. My ped wasn't very concerned since he wasn't making the effort to speak and assumed that his siblings were speaking enough for him. At that point we moved to New Mexico for a temporary assignment. We looked at starting early intervention at that point but when I called them he had enough approximations of words that he would not have qualified at 18 months. They didn't care about the fact that the only word he could get out that someone else other than my husband and I could understand was mama and he only used that when he was upset.

 

After that phone call to EI I just refused to deal with them since they didn't even want to send out someone to do an evaluation. They would have it I had insisted but at that point I was done dealing with the person and figured I would let him wait until he was 2 and deal with EI when we got back Alabama. We moved back in the fall and I'm finally getting around to dealing with EI here. They are saying the same things although this time they are willing to do the evaluation without me begging for it. The problem is that he has about 50 approximations for words and only 3 words that would be clear to other people(mama, mil for milk, and nana.) Most of his approximations you have to be watching what he is doing in order to understand what he is saying and they are made up of mainly vowel sounds. The EI coordinator that I spoke with said that most likely he will not qualify because they don't care about articulation only building vocabulary to let the school system deal with articulation later? Is that normal? You would think that the earlier you get a child to start making more consonant sounds the better. I'm just trying to figure out where to go from here if he does not qualify for EI. He has an EI evaluation on Friday.

 

We are currently waiting to get an appointment with his ped to talk about his milk intolerance and other possible GI problems.

 

I'm just lost on how to help him. All my other kids talked early and had huge vocabularies at his age.

 

Any advice would be greatly appreciated.

[wapiti]

Let them do the evaluation. If you dont 't like what they offer (or if he doesn't qualify), you always have the option of getting a private speech eval. Note that EI services stop right at 3 y.o., and there is lag time between getting evals, having a conference, and actually starting therapy.

 

Regardless, in a few months, call the special ed department of your school district so that an appointment for evaluation is set up for just after he turns 3.

[*Jen*]

I'm only doing the EI eval because I'm in a school district that does not like to give services without a fight. I've been told by several others in the area that if you can qualify for EI right before they turn 3 that when you go to do an IEP with the school district most kids get more services because of the EI service provider being there with you to help get them the time that they need. Otherwise our local school is known for not providing enough services for kids not in school.

[EKS]

I have not dealt with EI, so take my advice with a grain of salt. My understanding is that EI is supposed to catch problems that could hamper a child in school and then remediate them before the child enters school (if possible). I'm guessing that they apply the same sort of criteria for services that special ed does--the kid has to be well below average before they qualify. I'd be concerned that because he is not yet 3 (which I've heard is some sort of magical cutoff for speech issues), they will decide he doesn't need help even if he does. Also, given that his siblings were advanced speech-wise at his age, I'd be inclined to think that there is something going on, even if he tests as "average." All of this is to say that if at all possible, I'd consider an evaluation by a private SLP.

[Lecka]

I am mentioning this if you happen to be military. Go to your pediatrician and ask what you need to get a referral for speech. The pediatrician might know about how to get services where you live (EI or private). If your pediatrician doesn't seem to know, you could even ask at the EFMP office if they have advice, or someone there might tell you a pediatrician to switch to (still on post). I have been pleasantly surprised quite a few times, to be honest.

[wapiti]

I'm only doing the EI eval because I'm in a school district that does not like to give services without a fight. I've been told by several others in the area that if you can qualify for EI right before they turn 3 that when you go to do an IEP with the school district most kids get more services because of the EI service provider being there with you to help get them the time that they need. Otherwise our local school is known for not providing enough services for kids not in school.

 

 

Be aware that the criteria for getting EI are more "medical" in nature than the criteria for getting IEP services. Criteria for an IEP are academic. The school district does its own evaluation, and EI's evaluation should be irrelevant to that. As far as who will be willing to provide what services, you won't know until you try. At a minimum, you'd have some evaluations and thus more information to go on.

 

If they don't provide services to your satisfaction, look into private speech therapy. (That's what we did - I didn't feel that the special ed preschool offered by the district was giving my boys enough time with the speech therapist, so I pulled them, put them in a different preschool and did private therapy.)

 

Also note that it is common for school districts to not provide any IEP services to homeschoolers for K and up.

[Crimson Wife]

I would push your general pediatrician for a referral to a developmental pediatrician. I don't want to scare you, but you need to rule out issues that go beyond just a speech & language delay. I was so focused on my little one's speech issues that I missed some of the "red flags" for autism. I had naively thought that her social interaction difficulties stemmed from not being able to understand and use language. A developmental pediatrician can help discriminate between just having a speech & language delay, and a global developmental disorder like autism or PDD.

 

Here is a good screening checklist from Autism Speaks.

[Clarkd]

Unless there are other issues going on he will likely not qualify. You could get an overall dev screen ref. from your ped. Private speech could also be an option, but I would wait. If the dev. screen is okay I would tell the sibs they can't talk for him or get him things without his request. I would start using simple signs for the basics of daily life and wait it out. Speech development is highly variable in young kids.

[Lecka]

I agree about seeing if the pediatrician would refer for another screening like Crimson Wife said. I think often parents have an idea they should be concerned or an idea they can let things go, and often I think parents are right.

[*Jen*]

I looked into if our insurance will cover anything and I don't think they will. It used to show that they cover 90 sessions per calendar year but now there is a note saying that it only covers speech therapy for injury or stroke. It won't be impossible to come up with the money for private speech but it will definitely take some work.

 

I will look into a private eval and private therapy. I just have a feeling that something is wrong especially since he makes almost no consonant sounds. When he does talk he sounds like he is trying to talk around a mouth full of marshmallows.

[celticadea]

Each school district is a bit different but i'll give you a bit of a rundown of my experience.

 

My daughter was not speaking (at all) at her 18 mo checkup so we did the referral to Early On. She was tested and qualified for services. EI tests for more than just "academic" things since infants do not have academics. In the testing that they did, we also found out that she had problems with sensory integration (the reason she was either super happy or super upset and would shriek constantly and run and spin and climb....etc.....)

 

At 2, she hadn't been making much progress in her speech, so we did the Special Ed Eval (leads to an IEP). She qualified again and they increased her services. At this point since she's <3, all of her services through the district are at our home. She's been making progress but in August will turn 3 and will go into the school for services and oddly the level/frequency of services tends to drop for ages 3-5... :(

 

Anyway, this led us to get a private eval done to get a formal diagnosis (childhood apraxia of speech) and look into our future treatment plans. We started treatment at the private place a couple weeks ago but will continue to utilize the school district SLP. So far they've been willing to coordinate with the private SLP. We live far away from the private clinic I chose so can only go 1/wk. Working with the school ups the frequency of services.

 

End result...definitely push for the eval by Early On. At worst, they decline services. Also consider pursuing a private eval (schools won't officially diagnose).

 

As his mother, you know something isn't right. Don't let them push you off. You have to advocate for him. The more and better treatment kids get when they are littler, the better they will do. Good luck!!

[PeterPan]

I looked into if our insurance will cover anything and I don't think they will. It used to show that they cover 90 sessions per calendar year but now there is a note saying that it only covers speech therapy for injury or stroke. It won't be impossible to come up with the money for private speech but it will definitely take some work.

 

I will look into a private eval and private therapy. I just have a feeling that something is wrong especially since he makes almost no consonant sounds. When he does talk he sounds like he is trying to talk around a mouth full of marshmallows.

 

 

I'm trying to imagine what it sounds like talking with a mouth full of marshmallows? Indeed the cutoff is 50 *words* at age 2. Partial sounds (just vowels) are not considered words. Animal sounds are words, so if he can imitate animal sounds (hehe like a monkey, moo, whatever), that counts.

 

Just so you know, it's entirely possible what you're dealing with is apraxia. If it is (since you're paying for the evals and therapy) your word to the wise is to make sure of what it is and get apraxia-specific therapy for apraxia. PROMPT is the best therapy available for apraxia. (Sorry to be so opinionated, but there you go.) And yes, if you have communicative intent but can't get the words out, dropped words that were there a bit and don't come back, low oral tone, inability to imitate, cherub cheeks, those are all indicators to think apraxia.

 

And no, the advice to wait is WRONG. Shudder. It's wrong because not everything in life is a developmental delay. If there were no communicative intent, then yes you'd be looking at a developmental timetable thing. But once you say there's communicative intent and a large discrepancy between receptive and expressive language, those are HUGE red flags for apraxia. And apraxia DOESN'T go away and DESERVES to be treated. PROMPT is phenomenal therapy for apraxia. They put their hands on the dc and the dc SPEAKS. It's unbelievable. And the best part is, they want to teach YOU to carry it over at home, meaning you pay for less sessions and do more at home. It's perfect for homeschoolers.

 

So no, don't wait. It was ladies on the board here who gave me the shove 2.5, almost 3 years ago, sigh. Long journey...

[*Jen*]

Thank you for posting this. I have seen your posts before about apraxia.

 

After talking with a few friends that have dealt with EI in our area I feel like the coordinator was trying to avoid the hassle of taking in a kid just before he switches to the school system.

 

Words that he does say that most people wouldn't catch are "ee" sometimes with an n on the end for Green, "oo" for Blue, "eh-o" for Yellow, "Ya ye" for Daddy. She kept trying to tell me that these would count for approximations. Another one that I told her was "I oh oh" for I don't know along with a gesture. She kept trying to tell me that those were close enough to words, but even when I know what he is trying to say I can't figure it out unless he is pointing to something.

 

The more I read about Apraxia the more it sounds like him. He doesn't imitate at all, trying to get him to say something unless he wants to is nearly impossible, he doesn't seem to know how to move his tongue around in his mouth.

 

I've looked at the PROMPT website but there are only 2 people about 2 hours away from me that have taken the Intro Course, and 3 that are seeking certification that are 4 hours from me. Is it possible to use Prompt only going every other week or so? Driving between 4 and 8 hours round trip for one session seems crazy but I would do it if it would make a difference!

 

I'm trying to imagine what it sounds like talking with a mouth full of marshmallows? Indeed the cutoff is 50 *words* at age 2. Partial sounds (just vowels) are not considered words. Animal sounds are words, so if he can imitate animal sounds (hehe like a monkey, moo, whatever), that counts.

 

Just so you know, it's entirely possible what you're dealing with is apraxia. If it is (since you're paying for the evals and therapy) your word to the wise is to make sure of what it is and get apraxia-specific therapy for apraxia. PROMPT is the best therapy available for apraxia. (Sorry to be so opinionated, but there you go.) And yes, if you have communicative intent but can't get the words out, dropped words that were there a bit and don't come back, low oral tone, inability to imitate, cherub cheeks, those are all indicators to think apraxia.

 

And no, the advice to wait is WRONG. Shudder. It's wrong because not everything in life is a developmental delay. If there were no communicative intent, then yes you'd be looking at a developmental timetable thing. But once you say there's communicative intent and a large discrepancy between receptive and expressive language, those are HUGE red flags for apraxia. And apraxia DOESN'T go away and DESERVES to be treated. PROMPT is phenomenal therapy for apraxia. They put their hands on the dc and the dc SPEAKS. It's unbelievable. And the best part is, they want to teach YOU to carry it over at home, meaning you pay for less sessions and do more at home. It's perfect for homeschoolers.

 

So no, don't wait. It was ladies on the board here who gave me the shove 2.5, almost 3 years ago, sigh. Long journey...

 

[PeterPan]

Oh, I'm SO glad you posted back! I have this terrible habit of being so opinionated but also being so worried about people and how they're turning out. :)

 

YES, YES, YES you want to call those PROMPT people!! And YES, YES, YES this can work with a farther drive!!! I drive 2.5 hours each way. I leave 3.5 hours ahead, because I hit construction traffic, so I'm right there with you, feeling the pain. Here's what I would do. In general the higher the level of training they have, the better. Sometimes people who have done level 1 are getting ready to do level 2 in a month or two. If they are, and they're committed to learning the method and giving you PURE PROMPT (and I say that very precisely), then I would do the 2 hour person. However it's no rocket science to tell you that yes, those people 4 hours away are going to be better at it. They've had multiple times more training in the technique and are going to be lightyears better. My therapist was certified when we started, and now she's an instructor.

 

Pure PROMPT means they don't blend it with Kauffman or anything else. Not to be disrespectful to the very nice SLPs out there who use Kauffman, but come on. My kid doesn't need flashcards. PROMPT is what they need, and doing multiple methods confuses things (in my inappopriately unhumble opinion). I'm explaining all that in case you're tempted to mix therapists or find someone who is only level 1 and mixes stuff. Our therapist knows Kauffman and is conversant on what she use or doesn't use and why. Pure PROMPT has been a MIRACLE for us. My boy is diagnosed with *moderate* verbal apraxia. There are levels. I'm not trying to scare you, just telling you the truth. So the more severe the apraxia, the less likely it is he starts talking on his own, is intelligible at a later date on his own, etc. etc. I drive by actually a number of level 1 therapists and drive much farther for certified because I felt like they were all the same price and that in our case it was just an hour farhter. Well that's not exactly true, more like 45 min. vs. 2.5 hours. Anyways, the local people with level 1 training were not committed to *pure* PROMPT and were *not* continuing with the levels to improve on the technique. If someone has only had level one they DON'T know the full method. I've seen the training manual and read through it myself. *I* know most of what's in that manual now, having done it for several years with my ds. Ok, I went in with a linguistics background that helped me recognize and pick up on things (where sounds are produced, etc.). Nevertheless, there's a lot more to it.

 

4 hours is rough and I see your concern. In your shoes, just speaking as a mom, I'd be right there with you wanting the person who's getting certified. Just saying as a mom that's where I'd be. And I'm guessing your dh is having a heart attack. So what you do is you call the better people and the closer people, and you pick their brains. You see how long it takes to get in. There may be a wait. You try to get them to dish on the closer options. These people know each other. Those upper level therapists may have been at workshops with the lower therapists or heard about them. Start picking brains. Or find the instructor who has been teaching the courses and pick her brains. Talk with people and tell them your situation and see what they say.

 

If you decide to go with the 4 hour person (I'm just giving suggestions) one SANE way to do that is to go in for two days of sessions and spend a night at a hotel or with friends. Maybe somebody from your church or whatever knows a friend in that town who would put you up? And you go like that say every other week. Yes, they will teach you the techniques, and they may put on a parent workshop.

 

With the driving 2.5 hours each way, we did weekly for many months. Later we started spacing things out for a variety of reasons (like the gas had shot up to INSANE prices and...). We went through the first winter and kept schedule iirc, but the 2nd winter he was at the 50th percentile on motor control and we decided to take off the winter for the bad roads. This winter we wanted to take off but decided to keep going. We now go every other week and do back to back sessions, so 2 hours. (50 minX2) He does awesome with this.

 

I think, and this is just me having btdt a bit, that it was a LOT easier to help him with the PROMPTs when we were earlier on. So even though it's freaky and you want to go, go, go to the sessions, just DO WHAT YOU CAN. It's not necessary to combine it with another method, nor is it actually advisable. You can really mess up things if you plow in two directions at once. Sorry, that's a total aside. Anyways, if your reality is you go for two sessions once every three weeks, then during that time the therapist teaches YOU the things to do at home. YOU are going to be the magic in this. It's not only what the therapist does with PROMPT but how you're willing and able to carry the magic over at home. That's why spaced sessions CAN work. People do non-ideal approaches ALL THE TIME. There are people who come in with nonverbal 5 yos, do a week of intensive therapy, and leave with a TALKING DC. I kid you not. Do NOT get freaky about this. You've got the right method, and when they teach it to you, this CAN work.

 

(Note, that case I described was only apraxia, no spectrum. Add spectrum and you've got a much longer ballgame.)

 

Yes, you're standing your ground correctly on that speech. (at least from my limited realm of experience) I would have expected something like "boo" for blue. But getting /oo/ is a good sign, if it's any consolation. My ds had NO speech at age 2. Take that back, he had two sounds he never used (/m/, /a/) and one word (mama). The first day of therapy she had him saying DO, PUT, ON, UP, MORE, ME, etc. OVER AND OVER AND OVER... Yeah, I get really excited, lol. It still blows my mind.

 

Anyways, back to the therapy and difficulty of PROMPTs. At this point my ds' PROMPTs are getting harder for me to do. I can get the /ch/, /sh/, and /j/, but it took me a while to get them right. There are some she won't even teach me. They're sort of complicated, because the therapist is looking at particular muscles under your dc's jaw (myehyloid, blah blah, don't know what I'm talking about), and then slide the PROMPT between these precise locations. That's another difference when you go up the levels. I can do a lot of these PROMPTs and know where they are, but someone who is certified is FAST and confident. They just get in there and NAIL it. Remember, you're paying for someone to be a hand artist on your dc. The better they are with their hands and doing this, the more they'll accomplish.

 

Personality also matters. Don't fail to heed your gut if you or your dc doesn't like someone.

 

Talk with them and see what you learn. Maybe, hopefully it will be magic for you. Keep me posted. :)

[PeterPan]

Ds has been doing double sessions since the start of last summer. So that was a few months before he turned 4 that we were able to crank it up to double sessions. It was a huge relief, because it's a long way to drive and only do *50 minutes* of work, kwim?

 

I'm forgetting the chronology of how long, sorry, but we did 6 or 9 months of weekly then went to every other week and farther spacings. I gained 20 pounds with the stress and driving and eating to stay awake. Don't do that, lol. And the double sessions we started doing at age 3.75. I'm sure that varies with the kid and their progress and personality. My ds does best with consistency. When we paused our ST for the winter that year, he got out of the routine and it took a lot to get him back in. So consistency is good.

 

Sometimes parents stay in the room, sometimes they don't. I stayed, but I almost shouldn't have. It can help by connecting you to the process, but the dc can also game it. So make a plan you can implement consistently. Then videotape or sneakily observe the sessions or pay for extra time with her so she shows you what you need. Usually they'll show you something at the end. However you're driving a long way. If you need more time to get comfortable doing the PROMPTs and the homework, then have the session be a bit longer to allow for that. Your education is very important in this, so don't be bashful about asking for help.

 

I also keep a therapy notebook and write down every word they say and make notes. It helps me know mentally what I should be working on through the day, because I see the patterns of how she's stretching him and what she's working on.

[*Jen*]

Thank you so much for all the information. If I contact one of them about my concerns that he might have apraxia would they do the diagnosis or should I have him seen by a local SLP before I contact them. As I sat up reading about apraxia last night it sounds so much like my son.

 

I looked again at the site because I was mainly searching around Atlanta but there is a certified instructor in Memphis which is 4 hours from me as well. In Atlanta there is a handful of instructors that have completed bridging.

 

When your son started PROMPT was he doing any babbling/jibberish talk etc? My son will name things if we are reading books but other than that he will only say mama to get my attention, mil when he wants a drink or ja if I ask him a yes or no question. . Otherwise he doesn't make much attempt to speak. I do hear some random oohs, aahs, i's from him throughout the day but never consonant sounds.

[PeterPan]

These are full SLPs. They can do the entire process. You don't need your local SLP at all, and not only that but I wouldn't waste your money on the local SLP. The PROMPT therapist will want to eval the dc herself, because she needs to assess everything for purpose of therapy. She'll go through all the sounds, but she'll also look at tone, motor control, etc. She's actually going to DEMONSTRATE for you the motor control problems. (how his jaw moves or doesn't move, etc.) So no, don't bother with the local therapist.

 

I wouldn't call just one. I talked to probably 10 therapists when I was doing my search. ALL of them were very nice to me and willing to talk on the phone to answer my questions. Don't give them answers or lead them into what you want. Sometimes you get someone who will say they do PROMPT, when what they mean is they do "prompting". It's not the same. PROMPT is a very specific program. However with each person you're looking for things like:

 

-what percentage of their practice is apraxia or feeding disorders?

-how long have they been doing PROMPT?

-what level of the instruction they've done?

-what their plans are, whether they intend to continue through certification and if so when?

-what is their wait to get in? If there's no wait, I'd sure be trying to figure out why. Maybe your area is saturated?

-whether they do pure PROMPT or blend it with Kauffman? This is the tricky one. You want to ask really carefully, sort of saying you've heard of Kauffman too and wonder... I don't know, just say tactful things.

 

Honestly, when you get the right therapist, YOU shouldn't be the one asking the questions. If you get a good therapist THEY ask the questions and you answer, and you know by their questions how thorough they are in their understanding of the issues. But I would DEFINITELY call all the people on that list within whatever range you think you can make happen. You're going to learn a lot as you talk with several of them, and you'll probably have some distinct preferences by the end. You want that information. Don't just pick a person, call, and be done with it. You *can* get burnt. These are still humans, and some are better than others. It's going to cost about the same no matter who you go to, and this is not the kind of thing where you jump around from person to person. So time your time, talk with everybody you can find. Keep meticulous notes. You'll know when you find the person you want. :)

[PeterPan]

When your son started PROMPT was he doing any babbling/jibberish talk etc? My son will name things if we are reading books but other than that he will only say mama to get my attention, mil when he wants a drink or ja if I ask him a yes or no question. . Otherwise he doesn't make much attempt to speak. I do hear some random oohs, aahs, i's from him throughout the day but never consonant sounds.

 

 

No, he had no babbling. He had no sound. We would lose him in the house, and yes it was very freaky. But you know there's a wide range in apraxia, so don't look at my dc and draw any conclusions. This is also not a game of: it's not severe so you can wait and outgrow it. This is a motor control problem, not a developmental delay. They don't outgrow it. Some kids do begin to talk with apraxia, yes. But then you find a few years later they're 8, 9, 10 and still getting therapy for articulation (which of course DOESN'T address the underlying motor control problems). Or they begin speaking really rapidly to cover over their poor motor control. Or they sound a little funny, like they have an accent.

 

The most damning story to me, and this was what pushed me all the way with therapy to get the best I could, was the story a mom told me here on the boards. She said she had a twin and that the twin was labeled as more severe and got speech therapy for the apraxia while she (the posting mom) was labeled less severe and didn't. As an adult she realized that speech was MUCH EASIER for her twin than for her. That's part of what therapy does is get that motor control automatic so speech is EASY, so who they are inside can come out.

 

Sometimes people make this into a thing like you're calling your kid defective or making a mountain out of a molehill or treating something that will go away. You're NOT. You're identifying the root cause, intervening EARLY because it's now possible, and getting in front of all the LONG-TERM consequences of it. I wasn't willing to GAMBLE with which long-term effects (and there are more) my ds was going to have. There's a book out there that asserts that statistically it goes away, don't worry about it, blah blah. Well the people with 10 yos and 12 yos who are still non-verbal will tell you statistics are no comfort at that point. When your dc is slow to speak and people just say he's quiet and private (and sounds a little funny, can't put their finger on why), statistics are no consolation. Your dc isn't a statistic. He's a specific human being who, I think, deserves the best available treatment.

 

So be the Tiger Mom on this, fight, give up what it takes. It's going to BLOW YOUR MIND what they can do for him.

[*Jen*]

I'm definitely not thinking this is something he would outgrow or comparing him to your DS. The biggest thing that hits me is looking back at my other kids at 2.5 and seeing them talking in sentences and then my youngest barely making noises. I sometimes lose DS in the house as well. We recently went to Disney and it was terrifying any time I didn't have him on my back. Knowing that he if slipped away that he would not answer me or make noise to let me know where he was.

[PeterPan]

We did lose ds one day, like totally lost him for about 15 minutes, and yes it was TERRIFYING. We're surrounded by woods and have multiple paths out of our house. I had to call my dh and BIL from work and they came screaming up the driveway in their trucks, hurrying to find him. It got to that point where you as the mom start to break up and blather and get frantic and hyperventilate (like something on tv where the mom needs meds to calm down), and STILL we couldn't find him.

 

He had been in a room where we searched, but apparently he was tucked in a closet. So one minute he was playing quietly with his toy kitchen while dd and I talked homeschooling, next minute he was GONE. He went from that closet to outside the house, which is where we found him. Apparently he had gone out a harder to use door that we had inadvertently left open while searching for him, go figure.

 

Disney? Can't even imagine. Leash baby. Until he's talking and answers, get him on a leash and be done with it. Ds enjoyed ours. I took him to the conventions, but I strapped him in a stroller. It's just too dangerous.

 

Oh, and I wasn't saying you were being bad or something. I've just had so many arguments thrown at me about how I take this too far, my 3 (or whatever age) dc started talking and is JUST FINE (not, keep watching them and see the trail of what's left, I have), etc. Once you tell someone you drive that far, they either figure you're a nut or it's a desperate problem. I tell people flat up what apraxia is and make it sound severe, just to get through that hurdle quickly. Once you say your dc has a motor control problem and needs a specialist, people kind of good ooo, ooo and don't criticize. Then there are the professionals who offer to connect you with their local (very nice human being) SLPs. Then you go back to I'm taking him to a specialist.

 

Just you wait. You're gonna get it ALL.

[PeterPan]

BTW, have you tried anything nutritional yet? Omega 3 makes a HUGE difference in our house. I give him flax oil, because he gets fussy with fish. Other people do fish oil. There are some other things people talk about that can help. I put him on coconut milk and try to get eggs into him when I can, because those foods have things for the low tone.

[MistyMountain]

.

[PeterPan]

Wow Misty, that's astounding. We decided not to go through EI, but I did notice in our area the therapists listed were brand new, no experience. So not only would the therapist NOT have the specialized training for the best methods for certain problems, but she'd be GREEN! That was the kicker for me and when I stopped bucking my dh.

 

On the flip side, one of the people here on the boards who pushed me to get my ds eval'd 3 years ago used EI and the ps system the whole way. Thing was, in that case the therapist just HAPPENED to be this kick butt veteran who had a LOT of experience and who just HAPPENED to have taken the PROMPT level 1 training right before that and was committed to learning and doing her best. Huge range of differences there. And there can be budget.

 

Given what you're saying, I shudder to think what people conclude about whether their dc actually needs therapy, since they're being blown off like that. You'd have whole segments NOT receiving therapy who dreadfully need it and who could live ALMOST NORMAL LIVES if they got speech therapy. That blows my mind.

 

The other thing I've run into is therapists not diagnosing it for what it is. They don't call it apraxia, because then you can't research. Call it just some vague delay, and the parent assumes nothing can be done. Then when the therapist gets minimal or horrible results (because they're treating it like a DELAY, not a motor control problem that needs specific, alternate treatment they don't know how to provide), then you don't come back and yell at them and fire at them and be as irate as you SHOULD be over the sub-par care.

 

And yes, private SLPs will do the same thing. They'll take your $100 an hour and not help your kid or make it worse (by pushing articulation before there's proper motor control, the two are NOT the same), and there's no accountability, no recourse. You can't get back your money or that time that could have been spent in more effective therapy. So they don't diagnose what they can't treat. NO ONE should assume that just because EI or a private therapist won't label the apraxia that it's not happening. That's exactly the kind of cover-up and mess that's going on now. The private therapist I took him to first (and decided NOT to use) said we would work on "communication." She meant ASL. She totally blew me off. She said you can't diagnose apraxia till they start talking, which is totally inaccurate. (So my kid can't be diagnosed till he talks, since he can't talk no diagnosis???) Took him to the specialist, who diagnosed the verbal apraxia, put her hands on him, and helped him TALK the first day. He didn't need communication, he needed to be able to SPEAK.

[*Jen*]

Misty - how you and your friend were treated by EI is about how I feel I will be treated if I continue to deal with them. My DH was as fed up as I was after the first phone conversation when the coordinator told me that he wouldn't qualify because he had enough approximations. It seems like there is a huge difference in what people count as approximations. How can my 2.5 year old not qualify just because he tries to communicate (at home only) and none of us understand him, but my friends 14 month old who had two words and babbles a lot does? I could not believe when she said that they don't care at all about articulation and only work on vocabulary. I'm sure there are some kids that are delayed, but my son understands everything that you tell him. It obviously isn't a problem with him being able to understand or not having the vocabulary, he just can't get the words out to be understood.

 

 

Elizabeth - We just started him on Fish Oil about 5 days ago. He is currently on Almond milk due to dairy intolerance, He eats eggs several times a week for breakfast. I have noticed a lot more jibberish from him while he plays by himself. Not sure if it could be a result of the fish oil or from me just being more tuned into what he is doing while he plays by himself.

[PeterPan]

You're not crazy. You really will see changes that fast with the food. Try coconut milk. Our ped recommended almond milk, and my dd likes it. Coconut milk has good fats that are really good for low tone and the neural connectors. Honestly my brain is slipping at the moment what it was that's in the milk. Search the boards and find the thread. It's a precursor to some marvelous miracle thing.

 

Food doesn't replace the need for therapy, but for us it's what lets the therapy work.

 

And btw, I apologize for being so terribly dogmatic on the speech thing. On the one hand I'm totally into it, offended by what the other SLP said, defensive about our kids, blah blah. On the other hand, lots of people are perfectly happy with their SLPs. So I've probably squashed alternate opinions or made is sound like they're shortchanging their kids, which I really don't want to do. I don't even really know what to do about that, because about the time you say xyz is the BEST, it really does set up that unfortunate predicament.

 

PROMPT has only been out about 10 years. I envision a time when it will be the standard and widely available. I also see a lot of what, to me, comes across as flashcard mentality with therapy. On the one hand, these places like Super Duper and Linguisystems are making some great stuff. On the other hand, when a therapist goes on those websites and buys what they sell for apraxia, they're NOT getting the best methodology. They're doing what's easy. It's a lot harder to do the work of PROMPT. It wears me OUT watching our therapist work. It's hands-on an intense for an hour with the client, and they do that OVER AND OVER all day long. So yeah, watching the system for a while, I've gotten pretty jaded about what's going on and why.

 

However if people got success with another method, another way, I'm super, super happy for them.

[*Jen*]

I'll definitely try the coconut milk. I was getting ready to go to earth fare to pick up some coconut milk yogurt for him since he keeps sneaking bites of his sister's regular yogurt so I will add that to my list.

 

I totally understand being so outspoken about Prompt. From what I've seen from the videos I've watched today I can see why it makes such a difference over the flash card based speech therapy. Now it's just about calling all the SLP's that have completed the bridging and see what I can find out from them before I call the one Certified therapist. The one certified therapist is the director of group of 6 or 7 SLPs so I have a feeling that getting in with her may be difficult and she is the only one in her practice that has undergone any PROMPT training. Everyone else within 4 hours has only completed the bridging course.

[PeterPan]

Let us know how it goes! :)

[*Jen*]

Holy Smokes! I thought I heard DS speaking more jibberish today and then this afternoon he actually repeated a few letter sounds while my DS (3) was playing on starfall. He's never repeated anything I've asked him before. He said "ah", "oh", "ma" "mama" tried to say "b" and "apple." I guess he really is ready for speech therapy! Before this he would never repeat anything so I never knew how he would do speech therapy when he wouldn't even try to say anything.

[PeterPan]

That's amazing and fabulous! Don't lose track of the goal though. (full expressive ability) He still needs therapy. But that's FABULOUS and incredibly exciting. You add therapy onto it, and this kid is gonna rocket! :)

[*Jen*]

Believe me - I know that therapy is the only thing that is going to allow him to fully communicate!

 

Hopefully now that he is showing the want and ability to mimic sounds we can get him into therapy so he will someday be able to find his voice. I also can't wait for the day that I get anything resembling an "I love you" from him. He loves to give hugs and kisses and is the most snuggly of all my kids. I just want to hear those words from him!

[PeterPan]

Awww, that's sweet that he's so snuggly! My ds is a cuddler too. Just so you know, /l/ is very hard. Actually kisses are hard too because they require rounding. Does he pucker up when he kisses? I have some beautiful pictures I made of my ds when he was first learning to round. It was a big deal. So I guess celebrate what you get. Once he becomes aware of his articulation issues, he may start talking around them, which means you might not get the exact things you expect. Actually, I was trying to think about this. I get MORE now than I would have expected. Now he says these long sentences like "I LOVE to cuddle with my Mommy!" That works for me. :)

 

Here's a link to that shot where he had just learned rounding. That was a year ago, so he was 3.5. You can see it was new (not tight or fully round, etc.). Now he can do fish lips, etc. Anyways. I'll take this down after a day. :)

 

 

(removed)

 

 

You can see the cherub cheeks, so typical of apraxia. Another of the shots he looks distant. Not to haunt myself a few years from now when I remember this, but he does that, and I don't really know what it is. You'll be surprised at how your baby's personality will change as he can talk more. When they can't get out what is inside and there's that discrepancy, they sort of retreat internally with what can get diagnosed as spectrum. We have no indication that he's spectrum, but it's very rare to have pure apraxia. I plan to have him eval'd when he's closer to 7, just so I can know for sure if anything else is going on.

[*Jen*]

Your DS is so cute. No DS does not pucker to give kisses. Sometimes he can get half a pucker. It noticed that being said in one of the articles about apraxia that I read the other night about them not being able to pucker to give kisses. He still gives flat lipped kisses like a baby would most of the time.

 

I'm not quite sure what you mean by the cherub cheeks? Here is DS last month at Disney. To me his cheeks look the same as all my other DC did at that age.

 

 

 

Here are all my boys together. Too me his cheeks look the same as his brothers

 

[PeterPan]

So cute!!! You see the way his lower jaw is further out? That can either be instability or a bit of underbite that they outgrow. My ds is low tone, so when he started there was a lot of that jaw instability. Now he's 4.5, and what's left is just a dab of underbite that the dentist is hoping will go away as he grows. Both the SLP and dentist confirmed that at this point the jaw is stable and it's just how the teeth are lining up.

 

On the cherub cheeks, they'll be pudgy soft when you squeeze them in. You're looking at muscle tone. Don't compare him to his siblings, because tone is genetic. Compare him to other kids in the church nursery or at the playground.

 

The SLP will look at his overall body tone, core strength, jaw stability, oral tone, etc. She'll check all that. You don't even need to fret it or try to figure it out yourself. If you want, you can read about low tone. Benign congenital hypotonia is what you google. Don't get freaky about it, because LOTS of people are that way and totally happy. :)

[beaners]

*Jen*, do you mind if I post a photo also? This is my 2.5 year old. We've not had much more luck with EI than you have. For him to qualify for speech services, he would have needed to be completely non-communicative. He talks, but he gets so frustrated because I don't understand him. (I can only imagine how frustrated I would be if I had the difference in communication and general intelligence scores that he displayed.) My husband usually has no idea what he's saying. I can pick up on things from him pointing or the context or because I know what sounds he can't make. He has been talking a lot more recently, but he's still so hard to understand. He also does some funny reversals. Snow sounds like noze, for example.

 

 

 

I did have a PT tell me that he has low tone overall, and it's probably the reason he is doing some toe-walking and is hesitant to do things that require balancing or jumping. He doesn't have trouble eating, which is another reason EI said he didn't qualify. We just hit another dead end with EI, so I'm going to try to get a privately done evaluation for my son. They *say* they offer services for kids under 3, but he's going to age out of the system before any spaces open up for services through the county.

[PeterPan]

Beaners, you should go ahead and talk with a PROMPT therapist if you can get one. He's very sweet. :)

[MistyMountain]

This conversation about apraxia is interesting. I don't think my ds has it it and he is doing really well with the therapy he is getting but I wonder about my friend's ds. He seems to fit what you are talking about. I know during the time she was getting it looked into she heard from someone who didn't believe apraxia was real. He is a really really picky eater and I wonder if it is partially a muscle tone issue. I don't even know if there would be the right kind of therapist here and it isn't an option to go to another city farther away when you live in Alaska.

[PeterPan]

Misty, don't know where your friend is (and of course Alaska is a BIG place), but there are two PROMPT therapists (Anchorage and Wasilla) and another down in Wrangler. So it's not impossible. Didn't check their level of training but that certainly reflects a lot of effort on the part of those therapists to come down and get the training.

 

The best thing is for your friend to read up on apraxia, watch the video with Deborah Hayden, and call the therapists. They'll talk with her and help her sort through if she needs them.

 

Our SLP does apraxia and feeding disorders. You have some where it's sensory, allergies, that sort of thing. With ds, his low oral tone made him wear out before he was really full. So he'd eat and then be hungry again shortly. We'd get what we called "rejects" where he'd eat for a while, seem to be going great, and then just start spitting stuff out. The speech works on the oral tone, and there are things you do for oral sensory. Also she had us focus on giving him things that would build oral tone. There are whistles and special straw bloks and whatnot. More crunchy food, etc. The straw bloks are something you buy and put on his straw, no more sippy cups. Forces them to use their lips instead of their teeth or tongue to hold it in place. That way you get more muscle use.

[LaughingCat]

DD the older had chubby cheeks and an underbite (fixed via orthodontia). I have often wondered based on OhElizabeth's posts if she has a mild form of apraxia (she is unclear/mumbly/does not articulate and ST has not helped -but when I read the apraxia websites she doesn't seem to fit ). I have always attributed the chubby cheeks more to the underbite since they disappeared when her underbite was fixed but googling on chubby cheeks and apraxia has sure brought up a host of sites I hadn't seen before :thumbup:

[PeterPan]

LaughingCat, best thing in that position is to talk with a PROMPT therapist and see what they say. They can eval, see where the holes are in her motor control, and move forward. Most sites are looking at small children, not what it looks like in the teen years. What you're describing is how it could present, yes. But the therapist can help sort through that and identify exactly what the issue is.

[Lecka]

Do you know of anything telling differences between autism and apraxia? My son also does the "not answering" thing and it is a major symptom of autism I think. But if he is not answering he is acting like he doesn't know you are there.

 

He has a language delay but his expressive and receptive language are at the same level.

 

I am trying to figure out if I think he has language issues beyond the usual for autism (he does seem to be very typical in his language development to his therapists, and he is doing we with the autism-style therapy).

 

Separately my older son had a huge gap between his ability to be understood and his receptive and expressive speech. They were both vey good, but who would know, he was difficult to understand. When he started private speech the SLP told me they always expected to see behavior problems with the kind of gap he had, and that my son's crying/frustration when he was not understood we're not bad for what they see. Well -- it was on the bad side IMO. Also it was heartbreaking to see him try to play games with kids and have them not understand what he was saying.

 

So I would say -- do pursue speech if you are seeing frustration. It is not good.

[PeterPan]

Lecka, you can have autism *with* apraxia. What I read recently was that 50% of children with autism who have speech issues will turn out to have praxis involved. It makes sense since there's usually praxis and sensory stuff going on in other parts of the body as well. So the heartbreaking thing is if the dc with autism DOES have praxis (treatable) going on in addition to everything else and the praxis DOESN'T get treated because of the overall expectation of speech problems. When my ds was starting ST, I met a mom who was bringing her teen boy with autism. He wanted to learn to speak.

 

It's all water under the bridge, and parents do the best they can. I'm just saying it broke my heart. If you suspect praxis is part of the mix, look for praxis-specific therapy. A PROMPT therapist can tell in the first session if it's praxis or something else. That's their job, to sort out what is developmental delays, what is motor control, etc.

[Lecka]

I think I would like to know. He is able to copy me when I say words right now, and that is good, but he has got an articulation inventory going and it seems like he is behind on it. With the speech issues my older son had I am not going to say it is all autism.

 

Yet I think he actually talks pretty well for his level. He is delayed but he seems like he is making good progress.

 

He is doing very well with ABA therapy, but he has only just started speech therapy, and I am not sure of my opinion, and further, even if I did like her for language development (which he definitely needs -- he is just learning that books are a category and that animals are a category) and still need something else for motor control if that is going on.

 

He does stuff food in his mouth, but it is possible that is sensory. His OT referral is still working its way through insurance, and his pre-school I don't think has OT as a strengh (though I love his pre-school). So I am only just beginning to feel like I know what is going on with that. My older son stuffed food and stored food in his mouth but had stopped by the time he was 4.

 

But I am finding out that some things my older son does are sensory (he still spins all the time age 7, he still has an instinct of head-butting and knocking his head against things) and so I feel like checking the sensory is next on my list and just needs to be done .

[PeterPan]

Lecka, you can go to the PROMPT Institute website and use their provider locator. See who is within a sane drive (or not so sane) and give them a call. Then only way to know is to talk with them. Our therapist talked with me for an hour on the phone (on her dime!) before we ever went in. All the therapists I've called have been happy to talk. So talk with them, see what you can learn. And yes, sometimes people get in there for one dc and realize another needs to be seen as well. But it's not a mystical thing. You're finding a specialist, and they can tell you upfront and quickly whether it's praxis or what's going on.

[Lecka]

I had not thought of calling!