The First percentile in Speech | Autism PDD
Just wanted to say that there is so much you can do...seek out more ABA for him if you can. We did 2 hours of speech a week but most of that time she would scream...we had to teach the speech therapist ABA techniques so that Sarah would be motivated by her...the speech therapists did nothing different than our VB/ABA therapist except it was more structure in a small room and she would focus on one sound at a time before moving on to another..all flashcards too! I would make tons of pics he recognizes and flashcards for him..he may learn receptively & visually first like Sarah and then have huge language spurts from him holding it all in till he is ready to show off:)
Sarah had lots of things to say but didnt know how..never give up hope!! WE are here if you need anything!!
Hugs,
I totally agree with Shelly. Mark (my ds) had his 2nd session of at home ABA today. The therapist was wonderful!!! I was inside for the entire session until she calls me. I heard him say "Ready Set Go" with her, he said "Maam" for Mom... he said "Ball"... he followed instruction.. he kicked a ball (he never kicked.. only threw it with his hand)... I was incredibly impressed!!! HE NEVER DID THIS WITH ME!!! Part of me was sad that I, as his mother, could not have him do this.. and here is a stranger managing him.... I know it has a lot to do with training!!! So far, my experience with ABA has been positive. This therepaist is only going to be with us till end of August, and then only on Saturday,and I am currently looking for some one to take over when she leaves!!!! Try it out Kajoli!!! Also I have discovered that my son works better with "strangers"... he knows he canno pull any of his "issues" with them.... Mommy always caves inThat being said...yes speech is important. However, communication is a HUGE part of speech. 75% of communication is non verbal. For R to be able to communicate effectively through speech, he must first understand language. Before he can really start talking and have some functional language, he has to build some receptive language skills. Think of communication as a staircase, with speech being a step half way up the top. There are many steps in his development that R needs to complete before he can attain the middle of that staircase. It will take a variety of interventions to help him get there, not just speech. Floortime and RDI are two that you can do on your own at home the best that you can while you are looking for therapists. I know you've been looking for ABA too. In the meantime stay in R's face and engage him every single minute of the day....or make your dh do it, LOL. And increase his speech as much as you can, even if it means you have to pay some out of your pocket if you can possibly afford it. We do as many thirty minute sessions a week with Adam as we can, versus just one or two hour long sessions. His attention span doesn't really carry him through an entire hour anyway so he's really not getting a full hour of therapy.
Just got R's Speech Eval back and after 5 months of speech- i hour every weeks - its supposed to be 2 hours but they are so short staffed and someone keeps missing out - he tests in the First Percentile for both receptive and expressiveI remember the words from a book a read when we first got our diagnosis - "I know what a percentile is- 1 percentile means that 99% kids his age have better speech"
Please someone remind me that Speech is not the be all and end all and that Speech can come late as well and give me some hope
Makes me feel I should abandon everything else and focus on Speech
Should I ?
as well as a language school. I would up the speech to more than 1 hr/
week. I would almost be tempted to suggest 3-4 1/2 hr sessions. (It is only
2 hours a week so price wise not that much more but more consistancy) I
would up the ABA , change to VB/ABA if you can. It also helps if your speech
therapist and aba therapists are on the same page. Speech is not the end
all, language and communication is. You will need to help him develop his
language and communication. I think when my son was 2 there were a
couple of things that he was on the bottom 10% of. Your son is pretty
young so I would not give up on speech.
Just sending you hugs and hoping it comes with time...Mason was completely non-verbal until 3, it took a long time, but we have seen some real bursts of language over the last year! He is now 6.
I know how hard it is, but I wouldn't abandon everything...everything includes speech and even Mason's OT told us that she got some of his best conversations while they were doing pool time, trying to keep him calm in the water!
Just stay hopeful and know that you are a great Mommy and even if he can't tell you right now, he sure knows it!!
Yes. Speech IS the be all and end all. The thing that separates those with some hope of an independent life is speech. We are ALL judged on our speech. Our kids are judged on speech. Their behavior is affected daily by speech.
That said, all of the other therapies can and should incorporate speech. I would focus HEAVILY on teaching your little one what communication IS. An exchange of ideas and information. It's not about learning words. It's about learning how to take what is in your brain and put it in someone else's brain so that there can be some human interaction. So, yes, focus on speech 24/7/365, but don't stop other therapies. Just make sure that all those other therapies fold in to the overarching goal of getting true and free communication going.
BTW -- the first percentile (or less than the first percentile) sounds awful and it's exactly what you described -- 99 percent of typical kid score better than your son. But your son is not a typical kid. And MANY kids his age on the spectrum score in that area. Don't let this score discourage you, but do take it as an indication that COMMUNICATION needs to be the overall focus of your work with your son.
And, yes, definitely up the speech. He should be getting at least 5 half-hours per week. ABA can focus on speech, too.
Thank you all for the encouragement !Oh yes - I am a HUGE fan of ABA and he gets( or is supposed to get ) 7.5 hours a week - we are also trying to find someone else to do ABA that we will pay for - problem is ABA therapists
are rarer than a blue moon here
you all are so great and have given me so much to think about I am going to look for a BCBA in my area
thanks agan for all the words of encouragement
Tom scores in the first percentile for receptive speech and using speech to communicate. He scores in the 30th percentile for being able to label things. His being able to verbally speak is not my top priority. Improving his receptive speech so he can understand and being able to communicate in however he can manage will be more beneficial to him. I don't want him to go through life struggling with one form of communication when he may cope so much better with another kind.
At C's 2 year assessment the Vineland showed his communication skills equivalent to a 3 month old. We were in the 0.3 percentile. I remember thinking to myself my god, if they didn't give me a decimal place it would be ZERO percentile. I didn't cry, didn't get upset, I just went numb. The next day I went to work pretending everything was fine, locked myself in my office with the door shut and spent the whole day on the phone lining up therapy. I then threw that damned report in a drawer and didn't look at it again (no joke) until February of this year right after we got the results of his 6 year reevaluation and I decided to look through all of the old papers. It was then that I cried for the 1st time since C was diagnosed - mostly from happiness for how far he's come.
I know it's so hard when the numbers are staring you in the face. But your child isn't a number, he's a beautiful little boy. And even though "typical" kids are talking by this time, your son isn't typical, so who knows when it will happen. I never ceased to be amazed by how our children suprise us with progress when we least expect it. Autism is clearly the "journey of a thousand miles that begins with a single step." We just keep marching forward, doing the therapy, never sure what the outcome will be, but ever hopeful all the same.
You're a great mom. You're doing all the right things. Crank up the therapy hours to the maximum that you can afford. Do whatever else you can on your own. I agree with others that ABA is your best bet since he is nonverbal. You can also do floortime all of the other hours of the day, as it's easy to do on your own. Hang in there, don't let the numbers depress you too much. The one thing I think we'll all agree on is autism is very unpredictable. There is so much hope for the future.
VB/ABA took my grandson from being non-verbal at 20 months to speaking in 6 and 7 word sentences at 29 months. Once language came it came on like gangbusters. I can actually have a conversation, give and take, with Nate and he won't be 3 until the end of February. I never thought I'd see the day. He has been getting approximately 12 hours a week of VB/ABA and speech. The numbers are tough, but also remember our kids also do notcooperate so well with testing. My son is 3.5 and is the 1 % range
according to recent SLP testing, but with his VB/ABA program he knows
hundreds of items and actions receptively and knows feature, function,
class and associations of many items. He is using his pronouns correctly
and coming up with with original sentences that aren't always delayed
echoing. Once in a while we can get a back and forth conversation going
but not very often. As I look at it, every year he is the 1% but always just
about a year behind so he is making progress but so are the typical kids
his age. I think eventually it will all catch up. I also know that many
times he refuses to cooperate with SLP testing and a more accurate
picture could be made if we could add the input of what he can do at
home.
We do 1 1/2 hours of speech therapy a week plus 15-20 hours VB/ABA,
but I am not sure how productive the ST is because many times he just
doesn't communicate with her and I feel can get him to respond better. I
learn from the ST what we should be working on and then work with him
on it at home. The VB/ABA is also something you can do yourself with
your child, I try to hire people to work with my son just because mommy
needs a break and needs to get other things done also.
My sons pronunciation and sentence structure is always correct it is just
that he doesn't communicate much unless it is something really engaging
to him or something really important to him.OP, don't give up hope! Five months isn't really a long time - there is plenty of time for your child to progress yet! Progress often comes at a slow rate. I don't really know if the program your child has needs tweaking or not but you can certainly talk with your SLP about it. I like the suggestion made by another poster about daily therapy but unfortunately this is not typically available. I can tell you from experience that the really severe cases of speech and language delay (and the first percentile test scores indicate that this is a severe delay) ARE going to take some time to improve. In the meantime, ask your SLP what additional things you can do to help facilitate carryover of the skills she is working on in therapy. One hour of speech a week won't magically make an improvement unless parents and other adults who interact with the child help reinforce the targeted language skills. I've seen parents do some very impressive carryover activities that have significantly helped their kids out and you sound motivated to do this. Good luck!Daniel is 11 and he is still way behind in lang/reading which go hand in hand. He had no preverbal skills in infancey until had tubes/adnoids removed.
Oh, Kajoli, I am sorry that that sounds so discouraging!
But ... keep at the speech, maybe if you can, intensify it with additional, private speech for a time? We paid out of pocket for extra speech and it made all the difference in the world. Yes, it was a hardship for us, but well worth it!
The other thing to remember is, our kids have a different kind of memory than others ... just because you do not see evidence that Rohan is learning from all the therapy now, does not mean he is not learning! (This concept was validated for me when reading Reasonable People, last night -- his son DJ's vivid memories, even preverbal, began to make sense to him at the same time he learned to communicate!). I see this effect in Tuhina, all the time.
Plus the evidence of learning will come in sudden bursts ... and all that therapy will someday be validated.
Hang in there, it will be worth it!
The other thing that might be helpful is if your ST and ABA folks are on the same page. Our speech therapist writes a list of 4-5 things to practice for the week and each of the therapists is responsible to do that. They do oral motor exercises, kauffman cards, other articulation cards and her suggestions for receptive language and incorporating language into play. That has been vry helpful. She is also trained in ABA techniques and uses them as needed. just brainstorming for you...
Hang in there. I think you are doing the right things, speech, ABA, Floortime. You started treatment with R very early. I see a lot of good advice from other posters. I think the VB/ABA is what has made langauge click for my son. At 2 1/2 he started with a couple of words. At 3, he had 20 words. Now, at 3 1/2, he has hundrends of words, speaking in sentences, understands receptive commands, etc. He can communicate most of his needs. The first thing we did was teach him to communicate and the ABA/VB is really what helped that along.
I know you said you are looking for another ABA therapist. Can they train you or your husband in the techniques. I supplement by running the programs when they are not here. What type of ABA program do you have and how many hours? Most of our therapists had little or no training and it is working out well.
Hang in there!
Hi Kajoli,
Yeah, the raw numbers are kind of hard to take some time. I remember when the girls were first assessed at three, most of their skills were in the single digits. For language, Abigail was rates as 'disabled' - that was kind of tough. Try to use the lack of progress to justify more therapy hours and add in what you can, of course, and keep him engaged (which I know your are) - but also keep hoping. As has been posted a few times here, recently, our kids develop in fits and starts and can often make up a lot of ground in a little time - so maybe he'll have one of those fabled language 'explosions' some time in the next year or two - keep hoping! Abigail is not 'disabled' anymore. In fact, she's nowwithin the low-normal range for expressive and receptive language, as is her sister (their remaining language issues are more social issues, according to their current SLP). They just grew up a bit. It can happen!
If any of your ABA people can train, maybe you could consider hiring a college kid to come in and work some hours/week? I think you already tried that, right - didn't get much of a response? Can't remember if it was you...
Up here in the rockies you cannot get ABA
My son at one time scored in the 1%. I went numb when I was told. He had a few words when he was 1 1/2, some functional language when he was 3 (I want...), and then things started clicking after her turned 4. What has really made a difference is VB/ABA. Did you see the info you asked for on the other thread about being essentially non-verbal at 4?
Edited to add: Two of our VB/ABA providers are BCBA, one of whom mentored under Dr. Vincent Carbone. The Behavior Analyst Certification Board has a list of BCBA's in each state. If I remember right, you are in Tennessee. There are 110 BCBA's in TN. If you click on "Certificant Registry" and enter where you live, it will bring up the list. You can click on the name of a therapist in your area to e-mail them for more information.
http://www.bacb.com/consum_frame.html
My son was non verbal at three and scored in the LESS than .2 percent! He is much better now, he started getting words a little at a time, and now has sentences, so HANG IN THERE and work with your little guy on speech, and try hard not to worry, okay?
{{{{{{{{{{{HUGS to you}}}}}}}}}}}}
Kajoli-my sons speech is probably the same as yours, I would guess. My ds is probably older than yours-C is almost 4. He is trying to say alot of words, but they come out totaly wrong-he is stuck on everythign being "MU" "BU" or "DU" He CAN say 6 words, and he does ALOT os signs. I know his recptive is high, but I am sure percentage wise he would be a 1 or even less? I agree with keeping communication the focus in ALL therapies. Speech and communication are usually a part od OT and ABA. Good luck... I know it is HARD!Copyright Autism-PDD.net