How would you feel if your kid's ST said this to you?

[ravinlunachick]

"Your son is the most apraxic kid I've ever seen, short of those who are so brain-damaged that you know they will NEVER speak." :confused:

 

She went on to say how she can tell that he WANTS to speak, and how he tries to speak or imitate sounds, but isn't successful. Combine his difficulty producing speech with his autism, and he just gives up and either retreats inside himself (when his communication device isn't available) or finds alternate ways of getting his point across. Maybe she intended that to sound like some sort of supportive explanation for why he isn't making more progress in ST. I don't know. It sure did sting, though. :(

[amo_mea_filiis.]

It's possible it came out wrong. If he's "the worst she's seen" I'd start looking for someone else. There are always kids doing better and worse than yours (or mine). I don't like when my kids are at either side of things. If they're the best/highest functioning and the therapist doesn't seem to work as hard. If they're the worst, the therapist isn't experienced enough.

 

I know someone has to be on both sides, but it sucks to be that person.

[starwarsmomma]

I'd find another teacher.

 

The way this comes across on internet (it's hard to tell tone of voice online), is that she is deciding what he is and is not capable of. It's not her place to diagnose or limit his abilities.

 

I have a REAL PROBLEM with anyone trying to put my child into a box of limits and abilities.

 

They told me twice to make funeral plans for my son, that he would be dead within days if not hours. He survived both times and is his healthiest ever.

They told me to eliminate reading, writing, and memorization from my son's curriculum-- he's now at grade level and in some areas ahead by a grade OR TWO!

They told me I would NEVER have children. I have 3.

They told my mother she would be in a wheelchair her entire life. She was walking without assistance within 3 months.

 

I refuse to let anyone put limits on a child. Sorry-- it's a major pet peeve. LOL

 

If it's an option, I'd find someone with more of a positive attitude. What she said may or may not be true (no idea of the situation), but she needs to focus on each and every tiny goal and victory... not saying something like that!

[PeterPan]

Oh that one's EASY. I'd be thankful she finally told you flat up that she doesn't have a CLUE how to help him and go find someone who does. Your dc shouldn't have to be held back by someone who is willing to take his money when they don't know how to help. Go find a PROMPT practitioner, preferably someone certified. http://www.covd.org Also google Deborah Hayden and watch the extensive youtube video where she gives a workshop explaining PROMPT. There's absolutely no reason why your dc should stay with someone who doesn't know how to help him. It has nothing to do with personality or whether she was being good or bad. Regular speech therapy can be largely ineffective for apraxia, and the more severe the case the less progress you make. Mercy, my ds is diagnosed with moderate apraxia, with no PDD or autism or anything else compounding it, and he can't imitate. It just blows my mind why people think more of the same, ineffective therapy is going to get somewhere. They can't IMITATE because apraxia is motor control.

 

Well I'm just getting angry and spitting here. Find another ST, one who does PROMPT.

[momma aimee]

i have heard comments like that -- more than once -- about speech regarding both boys -- it is a fact :) so you just keep going. i don't see anything mean about it or anything -- it is jsut a comment on the long road ahead -- 3 years later that SLP is a dear family member to us, sees both boys, and is as excited as i am about the older one's progress.

[ravinlunachick]

OhElizabeth, I've emailed the two (!) ST's listed on the PROMPT website in my area. Both have only completed the "intro to PROMPT", so I'm guessing their training isn't very extensive. I love the place where he goes for therapy; his OT is awesome, and the ST.....well, she's okay. She annoys me because she likes to give parenting advice (down to how I shouldn't be buying toys from China!). Until this week, his OT and ST have been combined; we've only recently decided to split them in the hopes of getting more focus on speech. His ST tells me that she uses PROMPT methods, like physically manipulating his face and mouth for desired sounds. She has given me oral motor exercises to do nightly for the past year. They've had no obvious effect.

 

She doesn't have the most engaging personality, but ds works hard for her. The waitlist for another therapist at this location is months long. We just got him into afternoon time slots (after 18 months) so that he won't have to miss an entire day of school this fall to do therapy. That's a very long-winded way of saying that I'd rather not give up on her just yet. I'm not sure yet how I'd know it's time, and like most moms of SN kids, I have a lot of guilt already about wasted time before his diagnosis. He's been in ST with 3 different therapists, since he was 18 months old, and we still don't have a single consistent word. :(

[Dobela]

:grouphug::grouphug:It always hurts to be reminded that your child is different than others in ways that you don't want to be different. No matter how it comes out.

 

 

 

I would be another who would look for another speech therapist. She may be wonderful and get along well with your son but there is most likely someone that would be a better match. Recently dd4's SLP left our center for another job and we were just heartbroken. She was wonderful and corrected issues that no one else could. Now though we have another SLP and she is fabulous as well, and has much more experience in the new areas of difficulty for dd that have popped up. Our old SLP would not be a good match for dd anymore skill wise.

 

I see that he is in a special center. Sometimes those therapists are overwhelmed with caseloads and don't have time to really specialize. Have you looked into private therapies? Maybe you can find one that will have the background you need, and be able to remain his therapist as he transitions into school age programs.

[PeterPan]

Ok, so you're saying it doesn't bug you that your ST *lies*, saying she uses a technique she can't possibly know (not having done the workshops), doesn't get results, and uses the expensive time *someone* is paying for to lecture you on toy purchases rather than helping him talk???

 

Sorry, that just makes me angry. I want *you* to be angry. Absolutely you should go to one of those PROMPT therapists!! Take what you can get !!!!! No, somebody who thinks they know what it is because they are cueing (what your current ST is doing) doesn't have a clue. They're holding your dc back. I'm telling you *I*, having attended a parent training workshop for PROMPT, know more PROMPT than your ST. "prompting" and PROMPT are not one in the same. Get the real thing. If a level 1 person is what you can find, get that.

 

Now, I'll tell you some more things. How old is this dc? Let's get radical here. I know someone who moved from another state to be able to use our current ST and put their dc in an apraxia school program in our state. If you have a dc of school age who isn't talking and are looking for options, those are the types of things to start considering. I mean obviously, work with what you have locally. Start with those level 1 PROMPT people. Broaden your search and see what would happen if you searched say within a 4-6 hour drive. If you could drive 4-6 hours and get someone certified, then I would do that once a month and let them coordinate with the closer person who has the level 1 training.

 

PROMPT is not just what they do in the therapy sessions. PROMPT is something you carry over in the home, meaning less frequent formal therapy, more small pockets of time you spend in the day working with him. So if you have a long drive to find someone, that's how you balance it out. It's not like regular therapy where they want 3-4 sessions a week. PROMPT is typically 1, sometimes 2 times a week. And there's a parent workshop so you can understand the process better and implement it in the home.

 

BTW, the lying thing is pretty common. Put any spin on it you want, but it makes me VERY angry. It makes me angry because it keeps people from leaving and getting the help they need from someone who is more qualified.

[ravinlunachick]

Dobela, the ST we're discussing *is* a private therapist. The one from the public school (where he goes to full-day spec-ed preschool) is a JOKE. The only thing she is good for is halfway teaching him to use his communication device. Incidentally, that device was purchased by US because the school district, even though they own numerous identical devices, refused to provide him one. They insisted he'd do just as well with velcro PECS. He didn't. So, we bought our own GoTalk 20, and he quickly outgrew it. We use ProLoQuo2Go on our iPod and iPad at home, but we can't send those to school. Supposedly, the ST at school is looking into trying to get a Dynavox for him to use at school. I will believe it when I see it.

 

OhElizabeth, I just watched the video. Seeing her working with that little boy showed me that ds's ST *is* doing precisely that. Or rather, she is trying. My son isn't able to do nearly as much as that little boy, and they said he is only 2 years old, how depressing. It's one thing to see on paper how delayed your kid is. It's another to have it in your face. Sigh. My little guy tries so hard to speak. You should see him sometimes, pulling on his tongue to try to get it to do the right thing when he's trying to talk. His mouth just never seem to want to cooperate.

 

On a positive note---we have been trying to potty train him for over a year. He just hasn't been able to relax and go on the toilet. Suddenly, a couple weeks ago, it "clicked". He hasn't work pull-ups in nearly two weeks!! That's not to say he hasn't had the occasional accident, but it's a GIANT step from where we were. Happily, my 2.5 year old saw her big brother doing it and announced that she wanted to wear panties. She's out of diapers too! Woot!

[Dobela]

Dobela, the ST we're discussing *is* a private therapist. The one from the public school (where he goes to full-day spec-ed preschool) is a JOKE. The only thing she is good for is halfway teaching him to use his communication device. Incidentally, that device was purchased by US because the school district, even though they own numerous identical devices, refused to provide him one. They insisted he'd do just as well with velcro PECS. He didn't. So, we bought our own GoTalk 20, and he quickly outgrew it. We use ProLoQuo2Go on our iPod and iPad at home, but we can't send those to school. Supposedly, the ST at school is looking into trying to get a Dynavox for him to use at school. I will believe it when I see it.

 

 

We see a private therapist as well. Always have. I would still look for another therapist. Even in private therapy a good SLP should be able to make recommendations to a your doctor and help you get a communication device that is paid for by insurance. The school, well, don't ever count on it. They will have many reasons why they can't ever afford one or provide one.

 

Have you considered talking to the owner or the supervisor of your current private center to see if they have any suggestions? Or to let them know of your current frustrations?

 

Is there a Children's Hospital near you? Can your son be seen by someone there that may have more comprehensive training? Most children I know with assistive communication devices have used specialists in our Children's Hospital to get them. And to find better qualified therapists.

[PeterPan]

The other thing you can do is call/email PROMPT and have them broaden the search till they find the closest certified PROMPT therapist. Call that person and talk with them. I know mine does intensive therapy, where kids will come in from far away, do a ton of therapy for one week, then go home with the parents armed with things to do with the dc.

[ravinlunachick]

Supposedly, they didn't want to request a device yet because Medicaid will only cover one every five years, and they were afraid he would outgrow the device that was appropriate for him at the time (the GoTalk), which he absolutely did.

 

The private therapy center is associated with the Children's Hospital, as is his developmental pediatrician.

I'm processing. Please don't think I'm ignoring your suggestions, OhElizabeth. I will look into this and talk to dh and see what is possible for us to do right now.

[Koerarmoca]

:grouphug:

[PeterPan]

I'm processing. Please don't think I'm ignoring your suggestions, OhElizabeth. I will look into this and talk to dh and see what is possible for us to do right now.

 

Oh I understand. But definitely keep us informed of what you find out! :)