Special Needs

DS may never speak-frustrated

Lurker here but really need to vent.

DS has been in speech therapy for oral motor issues for about 1 1/2 years.  We recently aged out of our county's program which to be honest wasn't doing much for him.  We found a private practice but after 2 months found out that our insurance covers about 1% of it leaving us with a bill of $120+/week.  We stopped therapy about a month ago and I've had no luck finding a practice that 1) will take our insurance and 2) has spaces available.  It's so #$$% frustrating.  

We live in a fairly large metropolitan area.  Why is it so hard to find someone to help us without having to pay an arm and a leg?   

DS' issues are that his facial muscles are not as developed/strong as they need to be and he doesn't use them correctly to form words.  He knows what he wants to say but just can't form the words.  Most of his words sounds identical.  

He's 3 and I'm worried that his peers are going to fly by him this year with speech.  He already gets frustrated when people can't understand him.  I don't want this to get worse.  

I just got off the phone with our insurance co. after finding out that our most recent practice which would have been perfect is not covered.  

Vent over.  I'm sure once I calm down I will put this in perspective.   

I know he will eventually speak. 

Re: DS may never speak-frustrated

  • How old is your son? If your DS has aged out of early intervention, did EI at least get the ball rolling on an evaluation with the local school district?

    Also, were the oral-motor exercises only for speech or does your DS have feeding issues, as well? Strength is not really a huge factor in being able to form sounds- it's more motor planning/coordination and range of motion that might be big issues. I'm sorry he didn't make any progress with the county program. That would be very frustrating.


  • Can you get any help through your local school district? Ds gets his speech at preschool through the school district.

    My 20 mo. old has more words and can be better understood than my 3.5 yr old can, it's tough.

  •     Do you think Sign Language may work?  I've worked at a school for the Deaf for twelve years now and American sign language is not that difficult a language to learn.  I've worked with coworkers who Sign as their primary form of communication but weren't technically Deaf, but for one medical condition or another they couldn't speak and they lived complete and independent lives.  Sign language might be a nice, convenient bridge until you get everything with speech therapists and insurance gets figured out.  I hope everything works out, please ask if you have any questions.  

     

       -Kevin  

  • I agree with the PP about contacting the local school district for an evaluation.If he qualifies, he should be getting a preschool speech therapy program. The evaluations and process varies by school district I believe, but does not hurt to get in touch. 
    Baby Birthday Ticker Ticker BabyFetus Ticker
  • To add...check out universities with a masters for SLP. There are some with clinical programs. College Park is one. Prices are much better than private practice.
  • I'm in Arlington, too, and DS has apraxia -- sounds like what your son has.  EI did NOTHING for him -- they just didn't have therapists capable of dealing with his needs. Trying to find a PROMPT provider that accepts insurance is so hard.  I know that Children's Speech and Language Services (S. Columbia Pike and Wakefield) is in-network with Kaiser (we go there, but pay privately.  They are the local PROMPT experts -- the director trains therapists across the country in PROMPT).  The Chesapeake Center in Springfield accepts a lot of insurance programs (but I don't know if they have any PROMPT therapists).  I have another friend who gets speech at Georgetown Hospital.  Took her a while to get an opening for her son, but it is in-network.  Hope this helps!!
    Zachary, 8.31.2007 * * * Adam, 3.24.2010


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  • Services are expensive.  It's hard because the people who need them really need them.  I don't begrudge what I pay private therapists because I know the work they do is important, vitally important to my child's development.  I'm lucky that it is manageable for me, but I get how difficult it can (and often) is.

    If you've been in therapy for 1.5 years surely they have been giving you 'homework' esp. with respect to exercises for the mouth and tongue.  There are videos out there as well that can be very engaging for a younger child that work on oral motor issues.

    I'd been inclined to go the private route in addition to someone who is covered by your insurance.  Bi-weekly private might do a world of good.  If you don't sit in on the sessions, start.  You will learn a lot that you can use during your time with your LO that can really help your LO in the long run.

    I've spent years in ST with both my kids.  Worth every session and every penny.

    Good luck.

    promised myself I'd retire when I turned gold, and yet here I am
  • image annibes:

    Strength is not really a huge factor in being able to form sounds- it's more motor planning/coordination and range of motion that might be big issues. 

    I am coming around to this belief. Nate has either some facial hypoplasia or paresis going on and for a long time I was attributing his speech problems to this. His EI SLP (who is pretty great IMO) really thinks that his issues are more of a motor planing problem than anything else. Nate has a brain malformation that effects motor planning called hypoplasia of the corpus callosum.

    Our SLP has also said that kids with weak tone or facial palsy will figure out work arounds for speech. She really feels he needs intensive PROMPT therapy 2-3 times a week and not the 30 minutes EI offers.  I am glad you posted this and the others gave out great ideas....I am in Baltimore and looking for an intensive program too.

    Good luck and keep us updated on your son's progress. 

    WAY 2 Cool 4 School
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  • I am thinking of going to a Nancy Kauffman seminar Nov. 9 th in Gaithersburg, md

    http://www.kidspeech.com/index.php?link_type=events&option=com_content&task=view&id=890 ;

    Sorry, I haven't figured out how to do links on this iPad.... 

    It costs 135.00 for a parent. It may also be a good opportunity to meet local SLP's.... 

    Maybe we should go and do a Mom's meetup??? Anyone interested? 

     

    WAY 2 Cool 4 School
    photo 4dce26cd-2fbe-4296-9bd4-89e87890c303.jpg

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  • I agree with KevinGC. ASL can be a great way to hold him over until speaking becomes easier for him. I will also warn you that some SLPs will tell you that ASL may keep him from speaking, this is completely false. My deaf husband uses ASL as his primary mode of communication, but has wonderful speech when he chooses to use it.Try aslpro.com

    As for Speech therapy, if your son is in public pre-school, you can request an evaluation by the district's SLPs, if they view his speech as having an educational impact they can arrange a 504 or IEP, so that he can be provided services by the school district at their expense. ( At least that is the protocol in FL and CO which are the states where I have worked)

     

    I hope everything works out for you!

  • The problem in Arlington public schools is the lack of PROMPT-trained therapists.  Z's been in 3 schools since he got his apraxia diagnosis -- not a single one had a PROMPT therapist.  (I love the schools otherwise -- Z is in a great program this year).  Also, I have gotten resistance about writing a specific methodology into the IEP.  Very frustrating.
    Zachary, 8.31.2007 * * * Adam, 3.24.2010


    imageimage
  • image Assembly_Reqd:

    I am thinking of going to a Nancy Kauffman seminar Nov. 9 th in Gaithersburg, md

    http://www.kidspeech.com/index.php?link_type=events&option=com_content&task=view&id=890 ;

    Sorry, I haven't figured out how to do links on this iPad.... 

    It costs 135.00 for a parent. It may also be a good opportunity to meet local SLP's.... 

    Maybe we should go and do a Mom's meetup??? Anyone interested? 

     

    Would love to go to this!

     

    Zachary, 8.31.2007 * * * Adam, 3.24.2010


    imageimage
  • I can't help you with Arlington, but I am in TN and my son was in speech for 5 years for a hearing loss - just started K. We got speech services through a University program, and they accept several different insurances. The EI stuff didn't help us at all either! When he turned 3, the county accepted him into a public preschool for special ed, which we loved, because he was essentially getting therapy 3 full days a week. Do you have a local CHILD FIND office in your city? I know other cities in VA do. They help with testing and placement for kids in your county from 2-5 yrs. At least they do here in TN and the VA website does as well. They are the ones that helped us get placed in a Knox County Special Ed preschool. I can't say enough good things about this school. He wears hearing aids and uses an FM system, but is no longer taking any kind of speech. 
  • I know how you feel.  We didn't even really understand what our daughter's oral motor issues were even though she was in Early Intervention since she was 6 months old and started public school in April.  We finally took her to a private therapist (at age 3 yrs, 4 months) who gave us a lot more information on her muscle weakness and coordination issues and we have a lot of work before us.  Does your son go to public pre-school?  Is he receiving any services there?  We are going to do private therapy with a focus on PROMPT starting in September in addition to what our daughter has in school.  It is going to be out of network and will be $125/session, which we will submit to insurance as out-of-network and should be covered 65%.  We have already spent thousands of $ on therapy - honestly, I'd spend whatever it takes to get her to talk.  It's a long road ahead.  I think we are looking at 5 or 6 years old before we get sentences out of her.  It is going to be a challenge but we are just taking it one day at a time.  Good luck!
  • image JenGK:
    The problem in Arlington public schools is the lack of PROMPT-trained therapists.  Z's been in 3 schools since he got his apraxia diagnosis -- not a single one had a PROMPT therapist.  (I love the schools otherwise -- Z is in a great program this year).  Also, I have gotten resistance about writing a specific methodology into the IEP.  Very frustrating.

    Thanks for all the responses!!

     DS does have apraxia and had been seeing a PROMPT trained therapist at Children's Speech Services in Arlington.  They were wonderful but they do not take our insurance and our insurance.  When we stopped I figured we'd be able to find another PROMPT therapist covered by our insurance.  I had no idea what a headache this would be.  

    One of the few therapists that are covered under our plan is Chesapeake Children's Services.  This is the company that we worked with under the PIE program.  I waiting on a call back from them but I've not very encouraged by this.  He made little to no progress with them under PIE and I don't know if they have any PROMPT trained therapists.  Our PIE therapist was definitely not.  

    He's in a private preschool and they don't offer speech therapy.  I could go through our county again but I feel that it's a waste of time for us.  I know he needs a PROMPT specialist and the county does not have any (at least that I know of).  

    Thanks again for all the responses.  I'm feeling a bit better about this and realize I will be able to find someone to work with him it will just take time.   

  • You might try Achieve Beyond (703-237-2219).  PIE was talking about sending us a PROMPT therapist from that agency, but we decided to go private because CSLS is less than a mile from our house and cheaper than PIE.
    Zachary, 8.31.2007 * * * Adam, 3.24.2010


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