Need help - dealing with speech delay - any recs on therapists? — The Bump
Georgia Babies

Need help - dealing with speech delay - any recs on therapists?

At 15 months I mentioned to the pedi that Eli seemed behind (no words, no pointing, no waving). She referred us to CHOA for a hearing and speech eval. We went to the Mt Zion campus and his hearing was fine. The speech therapist seemed clueless to me and told us that Eli was just above needing services for speech and that she wanted to wait and re-eval in 3 months. I really disagreed with her so I contacted Babies Cant Wait and had them come out to the house. A 3 member team evaluated my son and said he was significantly delayed in all areas - cognitive, communication, fine motor, etc. He is communicating (both expressively and receptively) at a 9 month level and he is now 16 months. I think they are more on target - I dont feel that Eli understands me well at all. He is really struggling. Furthermore, he has other "suspicious" behaviors that have me majorly concerned about autism. He toe walks some, taps his fingers, has sleep disturbances, chronic diarrhea, picky picky eater, etc. We are awaiting a complete eval from a dev. pediatrician, but its 4 months from now. So anyway, long story short, I am trying to see what I can do to get him some therapy while we wait. EI is going to come out once a week, but they said its mainly to teach us how to work with him. That's great, but I also want him to get actual speech therapy. Where can I go for this? Will insurance cover it? I wanted the Mt Zion CHOA place to do it, but since they said "let's wait 3 months" I dont know what to do. And waiting 3 months is not cutting it for me. Time is vital I feel, you know? Any advice, recommendations on therapists, encouragement you have would be great. I am a nervous wreck that is barely coping right now. I am so so scared and just need some direction on how to get my baby some help. Thanks

Warning No formatter is installed for the format bbhtml

Re: Need help - dealing with speech delay - any recs on therapists?

  • We went to CHOA in Atlanta. Had a wonderful experience there. 
  • Loading the player...
  • Thanks, Ra. So if I just go to a different CHOA location, will they reassess him? I was kinda thinking that it would be in their system that he had already been assessed at Mt Zion and determined that he didn't "need" services yet (which is a joke- I seriously think this lady had no clue).

    Warning No formatter is installed for the format bbhtml
  • Loading the player...
  • farrkfarrk member
    You could check with the Atlanta Speech School or the Marcus Institute.
  • Did Babies can't wait give you any other info?

    What about Georgia Pines?  I know they were calling to offer services to Colton because of vision.  I'm wondering what else they do.

    You could also look into private speech therapy.  We did private therapy for Colton out of pocket.  I have no idea if it helped but I wasn't waiting around for red tape.  I wanted something right then.

    Will keep you in my thoughts and prayers.  I know how disturbing it is when something is not right with your child but you can't seem to get answers.

     

  • Thanks Danielle, I really appreciate it. May I ask where you went for private services? I guess where you went may not offer speech though (if it was vision specific). I am willing to pay for private services, I guess I just don't know where to start. I will also look into GA Pines. Babies Cant Wait said they would refer for ST, OT, PT, etc as needed, but wouldn't do that until they started coming out (which starts next week). I guess I am just too anxious and ready to get the ball rolling.
    Warning No formatter is installed for the format bbhtml
  • Honestly, we had a horrible first experience at CHOA in Morrow. I wanted to bang my head on the wall when we left there. I would call the one in Atlanta and request a re-evaluation. We felt like the whole system moved so much smoother at CHOA Atlanta. You have a rec from your pedi right? I would call with that ask some questions, fax in your info, tell them about your experience and go from there. They worked with us so much that year with Jackson's PT. 
  • Thanks Ra. I will do that tomorrow. I think the Mt Zion place kept my referral, but it should be on file. I'll just call and let them know my experience and ask for a re-eval and see what they say. Thanks girl
    Warning No formatter is installed for the format bbhtml
  • kepkep member

    First of all, I want to say how very sorry I am you are going through this. We went though something similar with Kate, and it is so, so scary. I had a whole page of red flags for autism that she displayed. I had no idea any of the things were red flags until she was 18 months. She had no words, zero. She didn't point, didn't respond to a point, constantly lined things up, flapped her hands, seemed to be in her own world, the list goes on. I would sit on the computer, reading sites about autism and cry. It is so hard to see your child falling behind in milestones and exhibiting "red flag" behaviors.

    The first thing I did was look into speech therapy, getting a referral from our pedi. I signed up for the BCW evaluation, but it was going to take too long, so we started with speech and occupational therapy (pretty much immediately) at SPS of Atlanta. Here is a link: https://www.sps-atlanta.com/

    The reason I went with them is a friend of ours is a SLP and that is where she used to work (before becoming a SAHM). She told me that if her kids needed any therapy, that is where she would go and she knows they are thorough, etc. It was expensive and insurance did not cover it, unfortunately. On the bright side, we were able to use some of our HSA funds. In the beginning, we had two sessions a week--one combined speech and occupational therapy and then one speech-only therapy. The therapists also gave us stuff to work on at home. Our first appointment was longer and was a full evaluation. 

    In the meantime, we were able to get an evaluation with BCW due to an opening in the schedule. The person who did the evaluation said afterward that for Kate it could really go either way as far as autism and recommended us for therapy. But by the time the therapy actually was going to finally start, Kate was making some major improvements and we didn't start the additional BCW therapy (we still were going to the other therapy though).

    Also in the meantime (and pretty much from day one), we were trying to get an appointment with a developmental pediatrician. As you know, it is crazy how long the wait lists are, but we are fortunate to live in ATL! We saw Dr. Amy Pakula at The Marcus Autism Center. Our appointment was for July (I think), but they had a cancellation and called us to see if we wanted it. Ummmm ... YES! And we got in in March. It helps to be local and to be flexible and to let them know you want to be on the waiting list and will come in at the last minute, etc. Here is Dr. Pakula's info: https://www.marcus.org/default.aspx?id=58

    I don't know if I have helped at all, but I just wanted to let you know that my heart goes out to you. I am tearing up just remembering those feelings and that time in our lives. Whatever the outcome, you are a terrific mother who wants the very best for your child. That is evident! You all will be in my thoughts and prayers.

    image
    Photo by Everything Nice Photography
    My blog
  • kepkep member
    P.S. We also had an evaluation at the Emory Autism Center. You may want to check them out. (Their evaluation outcome at the time was similar to what we had been hearing--could go either way.) In addition, we were able to participate in a study that was going on at the time. I was open and willing to do anything that might help. Please feel free to contact me if there is anything I can do to help or if you just want to talk, etc. Karen
    image
    Photo by Everything Nice Photography
    My blog
  • Brooke, I am so sorry y'all are going thru this stressful time. I hope y'all find the right resources. Glad that y'all r getting some great advises and recommendations from the wonderful ladies on board.

    I actually made a comment to Karen last week that listening to how chatty Kate is now, you would not think that she went to a speech therapy :) She was telling Ms Donna everything :) I love it! I hope to hear your chatty lil Eli soon. Hugs and prayers to you guys!

  • Karen, thank you so much for sharing with me! You know then exactly what a nightmare our lives are right now. I am sobbing through the night, reading things that create a the most paralyzing fear in the pit of my stomach. I am hanging on by a thread right now. And the waits....I just cant take it. I am going to call the therapy place you used right now. I don't care what it costs. I begged the Marcus Autism place to put us on a call back list, but they refused, saying we had to call them and check each day. I call that lady daily, but no luck yet. I would absolutely love to talk with you if you wouldn't mind. Could I maybe call you or something? My e-mail is [email protected]. I recently placed Eli on a gfcf diet - did you ever try anything like that? He is losing a little bit of weight and had a fever last night - so now Im in a panic that maybe this diet is not healthy or a really bad call. I kept reading that it couldnt hurt and that people see huge improvements. I dont know....I am seriously seriously freaked out and grasping at straws right now. I would so love to talk with you so I could hear more about your daughter. Hearing that she is doing well gives me hope and encouragement.
    Warning No formatter is installed for the format bbhtml
  • Thank you Donna for being so kind and concerned....I cannot convey how messed up I am right now. I feel that I am not coping well with this possibility and the fear of the unknowns. Thank you for teeling me about Karen's daughter. This really gives me some hope
    Warning No formatter is installed for the format bbhtml
  • Brooke!  I am so sorry you are going through this!  I have not dealt with this, but I have two super close friends that have.  Shoot me an email or call me so I can get a little more info, and hopefully they can help point you in the right direction.  For now, be calm, take a deep breath, and break this down into steps you can handle.  Eli needs a happy healthy mommy right now, so don't wear yourself down in the process.  Create a plan, and continue to advocate!

     

    Kelly

  • I don't have any suggestions but I wanted to say I am sorry you are having to deal with all this. ((hugs))
    image
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker

    Pregnancy Ticker
  • kepkep member
    Of course you can call or e-mail me or we can GTG to talk if you would like. I will e-mail you.
    image
    Photo by Everything Nice Photography
    My blog
  • We saw Dina Liss with Let's Communicate. She came highly recommended from our pedi and was great with Lauren.
    image
    Lilypie Second Birthday tickers
    Lilypie Kids birthday Ticker
  • So sorry you are going through this!  We had mixed feelings about CHOA at Mt. Zion too.  I didn't care for the girl who did his eval.  But DH thought she was fine.  I chalked it up to me being 6 mos pregnant and just exhausted after a full day of work!  So we went back to them for therapy and saw a different specialist.  I liked her a lot but for the life of me, I can't remember her name (if I remember, I will pass it on!).  Anyway, once Gavin changed daycares, they started working with him so we stopped therapy, and we have seen a lot of improvement but he's still not where I think he should be at 3 years old.  The person at daycare that was helping him most is leaving now so I'm thinking we need to get him set up for real speech therapy sessions again.  Planning to talk to his teachers next week and see if they agree.  Will probably go with CHOA in cobb this time though since he's not at daycare at my office anymore.

    As for the autism fear, try not to buy into every single symptom that you find on the internet.  My nephew is autistic/severely developmentally delayed, so that fear was already firmly in place for me when I became a mother.  I think I over-analyzed every behavior Gavin ever had.  In particular, he has a weird habit of groaning when he's tired, concentrating, or just whenever (and Sophie is starting it now too- ugh!!)  It reminded me of my nephews self-soothing behavior and really concerned me.  I showed a video to our pedi, totally sure he would say it was autism.  He actually laughed and said that he could see why I was concerned but that he was 100% sure that Gavin is not autistic.  He called him "quirky" and you know what, he's right!  I was a quirky kid too and so was DH... it totally makes sense that our kids would not follow all the developmental milestones to the letter.  I'm not trying to tell you not to go for testing... you absolutely should.  But please don't panic.  Take it one step at a time and remember that no matter what the outcome, he's perfect :-)

    image

    image

    image

    image

     


  • I'm so sorry you are going through this Brooke. I know how hard it hurts to know something may be wrong with your child. I will be praying for you and your family. Try to be strong for Eli...a lot easier said than done, I know. Keep us updated.
    Photobucket Photobucket Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Thank you all for your support. It really means a lot to me.

     Karen, I e-mailed you. Thank you so much!! Kelly, I'm going to call you shortly. And Stacie...thank you so much for telling me about your experiences with CHOA. I called the rehab scheduler today to see what my options were and she basically told me that insurance would not pay for another eval and since the first eval didn't recommend therapy, they wouldnt pay for therapy either. So we are basically screwed with them. I did, however, call the Mt Zion office and left a message with the therapist that saw him to ask her to reassess or reconsider her assessment. We'll see how that goes. In the meantime, I am trying to get some out of pocket therapy scheduled elsewhere. I am glad to hear that Gavin is doing well, depsite not quite being where you want him verbally. I know how scary it must have been with having a family member that has autism. This whole autism spectrum is a very mysterious, scary thing :(

    Warning No formatter is installed for the format bbhtml
  • I am so sorry you are going through this right now.  I know how scary it is.  I've been having some issues with Benjamin that have caused me some concern but after speaking with his speech therapist about it, I'm a bit calmer. 

    At any rate, I digress and I'm not going to get into my fears about my own son right now because this is about your son. 

    We go to Cobblestone Therapy in Roswell for speech therapy.  They also have occupational therapy there too.  It was recommended to me by someone on the board.  I've heard great things about CHOA but I've also heard that it takes a long time to get insurance approved and to get an appointment.  Since Benjamin was a little past 2 1/2 when I decided to take him to speech therapy, I didn't want to wait a few months.  Cobblestone got me in right away.

    I've also heard wonderful things about the Marcus Institute. 

    Also, don't let someone at CHOA or any place, tell you what your insurance will or will not cover.  Call your insurance company.  Ask them questions.  Find out the answers for yourself.  Your insurance company will tell you what they cover. Each insurance is different.  While I know many, if not all, of them will not cover a developmental pediatrician (although I have no clue as to why), many of them will cover therapy.  They will tell you how much the cover and make sure to ask what your co-pay is.  My co-pay is the same as my usual co-pay for specialists but depending on your insurance company, they may have a different co-pay.  

    Finally, step away from the internet.  There can be all sorts of reasons for delays...many that do not have to deal with autism.  While I am a HUGE advocate for researching every thing that you can, sometimes, it's just not good for your mental health.

    Best of luck!

  • Thanks Traci! I know I need to step away from the internet. It does me way more harm than good. I feel like I'm on an emotional roller coaster - one day seems okay and then the next night I read something horrible and I am a basketcase again. It's exhausting and draining. Thank you for telling me about Cobblestone. I will add them to my list. All the places I called Fri told me they would get back with me next week. So I will try Cobblestone too and hopefully before too long I will have some therapy set up and ready to go. I will keep you guys posted. Please keep us in your thoughts/prayers.
    Warning No formatter is installed for the format bbhtml
  • Brooke, I am so sorry to hear this and can only imagine how stressed and worried you are.  I don't really have any advice, other than to say that my nephew was tested for autism at pre-school, I believe, and if they diagnose him with it, it makes him eligible for free therapy through the state, so I would look into that. I do know that if it is autism it is critical to start therapy as soon as possible, so definitely keep looking until you find some answers. 

    Good luck! 

    **************************************************
    Nothing is more discouraging than unappreciated sarcasm. 
    image
    AlternaTickers - Cool free Web tickers
This discussion has been closed.
Choose Another Board
Search Boards