speech delay/apraxia?

[Peony]

My DS1 is 28 months old, he has been in weekly speech therapy through EI since 19 months. At this point he has maybe 15 words he does know, and 3 signs. He has flat out refused to learn any more signs despite both myself and his therapist modeling more for him. He does do a full hour of speech therapy, he has an amazingly long attention span for a toddler and usually sits there playing with the same couple toys the entire time. He has recently started copying his therapist with certain sounds, but we never hear them outside of the speech sessions. His therapist is always asking me if I heard that, and saying he said this word, and no I couldn't understand him. I have 4 kids, I consider myself fairly good at toddler speak and guessing, but most of what he says, I can not understand. 

DS1 is a fairly quiet boy, hours sometimes can go by without him making a single noise.  A couple weeks ago it was 5 hours one afternoon . Other times he'll get chatty and sit there and have a conversation with himself, laughing and just talking away, you can never understand a single word of it. He often will use body movements instead of speaking, pushing something away or shaking his head. He does have lower muscle tone throughout his body, he can run and jump, play, but just has a floppy body. He didn't walk until 18 months but didn't qualify for PT, we did get a consult with a PT through EI who noticed the lack of muscle tone. He wears orthotics in both shoes as well. We do x-rays every 6 months now and see a podiatrist to track the progress on his feet. He out toes, no hip or leg issues. 

 I know he understands some of what we say to him. Until early this year, right before he turned 2, we weren't sure how much he understand, he didn't respond to any directions. He can find his shoes if asked, go out to to car, that type of stuff, all directions that don't involve him having to speak. I can't ask him if he wants oatmeal for breakfast or if he hungry or needs a drink, I get no response at all. Just getting him food involves putting things in front of him and he pushes them away until we get to an item that he doesn't push it away or will sign open. He JUST learned no a week ago and sometimes he says no now. He could understand everything I say, but just doesn't respond, there is just no way for me to know! 

EI just keeps telling me he is making great progress, blah, blah blah. And he is making progress, but very, very slowly. Nothing has been brought up as far as is this just a speech delay from them. One ortho doc we saw for his feet tossed around mild CP but obviously he isn't qualified to say that. I stumbled across apraxia and it is interesting me since DS1 does have lower muscle tone but I have minimal knowledge of it. I guess I have no real question, just rambling because I'm not quite sure what to do with him.  I've got 2 other kids with mild SNs and it was always more obvious, SPD, anxiety, dyslexia, etc... and they were older when it became apparent that they just weren't quirk or with my DD2, she has health issues that has been present since she was a newborn. We had answers within a couple to few months if it wasn't plainly obvious before, but not really the case now. 

[Jenni1894]

My ODD has apraxia.  They lack the skills and control to move your mouth/tongue to make the sounds.    Keep up with the speech therapy.   ODD is  3 1/2 (4 in early Nov) and last year she couldn't say her name and this year she sang the ABC's at our block party and did really well.   Such a small thing, it made me cry with happiness and pride that she did it!!   Then of course a week later she tells me "Mommy, the big girls don't hear my voice"  Why don't the hear me?"  :(  they hear her, God knows she's got a big mouth, they can't understand her.   Breaks my heart.  

I have a hard time getting her to say certain sounds.  Like the F sound...she can say it in isolation, but in a word, especially the begining or end, not much.   After 2 years of speech she's come a long way and it will get better.   We still have melt downs b/c she wanted the purple cup, not the pink one.....etc.  But now that she can communicate it's much better.   We went thru a "show me" stage.   I would lay out her meal options and she would choose.   B/c she couldn't tell me yes or no.  But she did however nod or shake her head.   

Ramble on mama, it's a hard thing to deal with your kid not being able to talk.   :(  

[Peony]

When was the apraxia dxed? I starting to get to the point where I feel like I need to start exploring what this could possibly be. I'm feeling like there could be more going on then *just* a speech delay. His speech therapist is awesome with him, I really like her, but she just returned to work after 7-8 years off right before we got her as a therapist and I think she is still paying catch up if that makes sense. I went through his words today and there are only 4 that anyone that didn't know him well could even recognize. Some of the ones I count as words because I know what he means, are no where close to the real word. We also live in a very rural area, very limited local resources, and honestly, many professionals here are quite behind the times. For two of my DD1's dxs, we had to travel and stay across the state for an extended amount of time. I'm just not able to do that anymore, too many kids these days. 

[Jenni1894]

She was dx'd at about 2.  Went thru EI in the home and she started school the day she turned 3.   In our state, she qualified for speech and preschool...5x week.    It's hard on her, but she has made great progress.  Her therapists are great and I think being with her peers and in school, a more formal setting helps her to concentrate and practice her sounds.   At 2 I could tell her go upstairs and get the pink toy from under your bed....she understood just fine, it was just the verbalizing that she has issues with.   My son had an articulation delay and his therapist was really awesome.   I learned so much from watching both therapy sessions.    DD has no other muscle tone issues.   We taught sign language and both kids made up their own signs and with time I came to understand that if DD was saying she wanted her hand on...she really meant either socks, shoes or gloves.  It was easier for her to say that I guess.   There are still many words that do not sound like the actual word.   School = tool, most words that start with /f/ sound like /s/, /ch/ sounds are more like /d/.  Some things I do is modeling the correct way to say the word.   Like if she says I am going to tool today!  I say yes, you are going to SCHool today. With an emphasis on the correct way to say it.  Some other things I picked up from watching the sessions were the straw/cotton ball game.   The use of a straw helps with muscles in the mouth and tongue.  Blow the cotton ball across the table with the straw.  We also will run finger up our arm as a gentle reminder of the /s/ sound.  our finger in a circle like a fan for the /f/ sound.   What kind of activities does your therapist do?   Has she given you any tips for working with your child?

[SpottedFoxx]

One thing I have learned is... don't trust EI - trust your instincts.  

Take him for a private speech evaluation.  We were told that our son was just too "busy" and if he'd learn to sit still, he'd learn to talk.  Well, my son has severe articulation delay with apraxia of speech (among other diagnosis).  It took seeing a professional speech therapist to get things figured out.  She was also the one who recommended we see a developmental pediatrician.  I am so grateful to her because we were able to get our son help earlier than later.  In fact, my best friend is seeing her next week and I'll be sending along a thank you card.

[chiefmir]

I think you've been given good advice already.  Since your DS is getting close to 3 years old, has EI talked to you about the switch from EI to the district for services?  That could be an important step for him.  In my nephew's case (he turned 3 in march), he's been in speech (and with lower frequency, OT and PT) since about 21 months.  At 34 months, he was re-evaluted (they have to do it CLOSE to but not after 3 yrs old) and he initially was offered the same frequency of services (speech weekly, OT/PT biweekly) but with the added difficulty of my sister having to get her son back and forth to these sessions (they were no longer given at home or daycare) in the middle of a work day on three different days.  After about two months, she was able to get him into a 5x a week special education preschool, and we are thrilled at the increase in services... really hoping that his SLOW progress (though definitely in the right direction,  like your DS) may be given a real boost with the increase in services.  Even an hour of great speech therapy can't hold a candle to 3 hours a day, every day.  So, when your son is re-evaluated, don't be afraid to ask for/push for any increase in services that may be available.  My sister had to raise the possibility several times in several settings... she was initially told that he didn't qualify because he wasn't "cognitively delayed enough" to fit into the available class.  This was not true, of course, if he qualified for services, they had to provide the needed level of intervention and could not refuse to educate him appropriately because the other kids who needed services were not a good match for him.

good luck!

[Peony]

Nope, EI hasn't mentioned anything about when he turns 3. My caseworker is eh. DS1 was approved for 6 more months of speech therapy in late May so this fall, we'll have another meeting which is just the caseworker and the speech therapist. I'm certainly going to start pushing for what comes next as far as his age. 

Our speech therapist has varied her techniques with DS1. In the beginning he wouldn't be pushed, if you didn't go along with what he wanted to do then he'd just mentally check out. Now he allows her to guide the play which is mostly cars and trucks, his favorite things. They make car noises, beep beep, sometimes he'll play with a farm game she has and she makes all the animals noises, last week it was a play tools which he had never allowed her to use before. She holds the toys up to her mouth so he looks at her mouth while she is talking. He tries to copy her sometimes. She isn't sure if he is aware that we can't understand him. 

Being the 3 of 4 of children, and a "easier" child, he does tend to get lost in the household, the other kids are so much more verbally demanding. He'll just go off by himself and be silent. I'm aware that is an issue. Right now my sitter is coming over 2-3 days a week to hang out with DS1 while the girls are in the school and I'm dealing with the baby and work just to interact with him. I could just let him roam around the house and play with his toys, he would be fine physically but not getting the verbal interaction. She spent all summer watching his speech therapy sessions so she tries to copy what the therapist does with him. He adores her and babbles up a storm with her often where with me, he doesn't. I think it is because he doesn't need to talk with me, I have always known what he wanted just by his eyes and the way he looks at me. 

I recently heard a private SLP moved into the area, I am very rural. Up until now there has no private services at all for literally hundreds of miles. I'm trying to track down her info. I couldn't track her down online, I'm hoping my pedi knows about her and I see her next week. Worst case then maybe this fall I can take him to Denver for assessment. I have to go up there for a conference anyway, it is 400 miles away so we don't go unless we have to. 

[Vikkile]

I know how rough it can be.  I am using a really cool at home program in addition to reg speech visits, I think between the two of them, it is working wonderfully.  I love the fact I can work with him when he is at his best, because sometimes when we get to speech, he is definitely not at "his best".... you know tired, cranky, hungry,.... the web site is Speechtails.com.  Good Luck!  VLRB

[APToddlerMama]

I don't have any answers for you, but my DS who is almost 3.5 was a lot like your DS at that age.  Low tone, walked at 17 months, 3 words when he turned 2, etc.  We really still don't know exactly what is going on and I've been on bed rest so our follow up apts have been delayed until next month when we will know more.  Anyhow, I was thinking though that you may want to try to get in to see a neurologist and/or a developmental pediatrician considering the low tone and speech delay.  Low tone can have an underlying cause, and it is interesting CP was brought up.  It was with DS too, but ruled out, I think by the MRI.  Anyhow, some follow up with other professionals might be helpful.  DS was also seen by genetics, and nothing came back on that either.

DS was very quiet (except for whining and moping around 24/7) until we changed his diet and did the whole GFCF thing.  I used to really think he had apraxia, but now I don't really see the same signs.  These days his speech skills are more or less on track, though his articulation needs major work.  He doesn't stop talking ever.  I mean seriously.  I think he was just feeling crappy prior to changing his diet around.  We also found out he had some food allergies.  Good luck in your search for answers...I know it can be a long road. 

[DaMama]

I recommend you get an appt with a Developmental Pediatrician. My son was diagnosed with Apraxia as a toddler and received speech therapy. He had very high receptive language scores and very low expressive language scores. He just couldn't talk for the longest time. He also got OT for sensory and motor planning issues. He had slightly low muscle tone and was slow to learn to do things like climb a ladder, jump, etc. Major milestones like walking and crawling were on target. We kept treating him for the Apraxia and now he is 7 and a total (understandable) chatterbox. It took a loooong time and lots of work but he made it. However, he was just diagnosed with Asperger's and possible ADHD. In retrospect this explains alot of the things that I couldn't explain away by Apraxia. Social differences, anxiety, intense focus on certain things, etc. He appears as a totally "normal" kid to most people, but we knew there was more going on with him. It sounds like you have questions about his behavior that you are not satisfied you can answer. In retrospect, I wish I had taken my son to a Developmental Ped sooner as I would have gotten even more info than a traditional IE eval will give. I don't doubt my son has/had Apraxia, but I obviously there was more going on than that. Trust your gut. If you feel there is more going on than just a speech delay than there probably is. Then you will know the best way to help him!

[Peony]

Right after I updated this thread, probably that same day even, his ST through EI was in a severe car crash. We haven't had services since from them, she is estimated to be out another 5-6 weeks. I got the private ST info and got her last slot for a temporary solution, she is the only private ST in the entire area. She is going to do an extensive speech eval on him for us. His sitter quit that same week as well, he "talked" so much with her. 

I just don't know about him. I'm starting to see odd behaviors, shoving his face into a hand full of woodchips because he got frustrated, throwing rocks on his own head, trying to jump off play ground structures because of frustration again. He also managed to eat an entire bottle of prescription pills this month with DH and I in the house with the child resistant cap on and everything, did it in about 2 minutes flat. I lost him at the park this week as well. Right by the playground it is heavily wooded, there are little paths through the woods. I was sitting right there nursing the baby watching him through the brushes, and then he was just gone. 10 minutes later I finally found him, sitting behind a bush, you couldn't see him unless you were on the other side of the bush. I had been passing right by him, calling for him and he just sat there silently the entire time. I feel like I can't do anything with him unless he has an adult solely to watch him every second. 

I'm going to start with this speech eval, she has a lot of experience with SNs kiddos, and see where that takes us. We've only had two sessions with her so far and she is working with him on things that our EI one never did. Making him stop and listen, instead of trying to engage him in his own world. As far as my next step after that, I have to travel regardless and my insurance covers nothing. I found this place that is 400 miles away, how far I'd have to go to get any further evals anyway.  http://www.developmentalfx.org/ It looks interesting.