Special Needs

Speech delay (likely autism)

Not sure what to call this...a whine, anxiety acting up...I dunno. All i know is that I need to get it out and that some of you will understand better than most anyone IRL for me.

Quick background: DS is 27 mos and is severely speech delayed. He has about 30 words and uses some 2 word phrases and short sentences. But that is sparingly, like he went a week with zero words recently and most days I hear just a couple...and i am the only one who usually understands him.

I am beyond thankful for both his spoken and receptive language. Just 6 months ago he had none of this. He hummed.

I think my anxiety is acting up after spending the holiday with NT kids his age and having it driven home just how far behind he is. That and he has his follow up dev eval in a couple weeks...at which i am expecting a dx of ASD (Am both looking forward to a dx so i can get him more help and am scared shitless of it) and he (FINALLY) starts speech therapy this coming week.

My worry: I'm worried he will never talk. I want so badly to know whats going on in his sweet head. Hell, I would be thrilled just to hear him say he wants food or a drink

BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

 

Lilypie - (2llN)

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Re: Speech delay (likely autism)

  • My Sweet DS1 started ABA two moths ago. He was 25 months and had under 5 words. He now has 200 and asks fir cup, I have to prompt juice, water, milk...but he asks to eat..,then says yogurt, cracker, etc. today he said...mommy! Help me! Down! He wanted down after eating....therapy is amazing ....get as many hours as you possibly can!
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  • That actually is part of the issue. Without a dx of autism, I cant get ABA covered. I flat out asked EI when we were going over his history and needs and she came back with "1 hr of speech therapy per week". He had a little bit of ABA just before our move from Cali. Makes me miss how proactive Cali is for things like this...there if you are under 3 and considered "at risk" for autism, its covered. More than that, they were estatic we were seeking help that early.

    DS does sometimes tell me "get down" or "down" when he's done eating...but that is often the only word I will hear all day...and it generally is well prompted by me.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

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  • Every kid is different, but the progress we have seen with DS1's speech since he started therapy in September is amazing. He went in with more skills than your son, but I just wanted to throw out that we too have been just blown away with progress and he is already doing things we had hoped he would achieve by kindergarten (2.5 years from now).

    I think you are at one of the hardest points right now. The stupid waiting game between starting the eval process and actually getting the diagnosis (or not getting it -- we were also worried about that & not being able to access all the great ASD therapy options as a result). You know there's a problem and you're trying to take steps to address it and you are stuck in this damn holding pattern. I hated it. Same with having the diagnosis and waiting to start services -- so yay for at least getting the speech therapy rolling this week. Hopefully the rest falls into place quickly for you.
    DS1: 09.12.10
    DS2 & DD1: 01.14.13
  • My kiddo was about in the same place language wise at 27 months--about 30 words but more labeling vs communicating and you heard them very seldomly. She's nearly three now and her language has really taken off. She talks all day long now and has hundreds of words. We still do have trouble with understanding wtf she's saying a lot which can really frustrate her but communication is much better. It's mommy mommy mommy all day long. She asks for drinks, food, to open doors if she can't get somewhere, when she needs her diaper changed, when she needs help, open this, etc etc. Instead of ripping things out of mine/her siblings hands she will say my turn and says please and thank you. She points to things she sees and tries to tell you about them. She still struggles with putting words together into sentences--it's mostly two words with an occasional three word sentence and most of the time one of the words is mommy. It really is a huge improvement from where we were a year ago. I know how sad it can be to see your child so far behind their peers but at those moments I think of how much she's improved and how hard she's worked.
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  • A2TP said:

    Every kid is different, but the progress we have seen with DS1's speech since he started therapy in September is amazing. He went in with more skills than your son, but I just wanted to throw out that we too have been just blown away with progress and he is already doing things we had hoped he would achieve by kindergarten (2.5 years from now).

    I think you are at one of the hardest points right now. The stupid waiting game between starting the eval process and actually getting the diagnosis (or not getting it -- we were also worried about that & not being able to access all the great ASD therapy options as a result). You know there's a problem and you're trying to take steps to address it and you are stuck in this damn holding pattern. I hated it. Same with having the diagnosis and waiting to start services -- so yay for at least getting the speech therapy rolling this week. Hopefully the rest falls into place quickly for you.

    Its really encouraging he has improved so much. I know every kid is different, but hearing others have seen improvements is encouraging.

    And you completely nailed my thoughts and concerns with the evals. I have known something was wrong for a damn year now (16 mos) and all but two months of that time he has had ZERO therapy (we moved cross country in Sept, didn't arrive here until Oct). I just want to help him and am scared about losing precious time in this window when he is so young.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

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  • KC_13 said:

    My kiddo was about in the same place language wise at 27 months--about 30 words but more labeling vs communicating and you heard them very seldomly. She's nearly three now and her language has really taken off. She talks all day long now and has hundreds of words. We still do have trouble with understanding wtf she's saying a lot which can really frustrate her but communication is much better. It's mommy mommy mommy all day long. She asks for drinks, food, to open doors if she can't get somewhere, when she needs her diaper changed, when she needs help, open this, etc etc. Instead of ripping things out of mine/her siblings hands she will say my turn and says please and thank you. She points to things she sees and tries to tell you about them. She still struggles with putting words together into sentences--it's mostly two words with an occasional three word sentence and most of the time one of the words is mommy. It really is a huge improvement from where we were a year ago. I know how sad it can be to see your child so far behind their peers but at those moments I think of how much she's improved and how hard she's worked.

    Thank you. It is good to hear from someone who had a kid at this level at this age.

    Usually I look back and feel good about where we are. For example when they first threw the word Autism onto the table he had two rarely used words and hummed all.the.time. My prayer then was to hear him say anything resembling a word...or just to make a new sound (ok, I was also praying it wasn't autism). Now I am hoping for more words and more communication. He has come so far.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

      My Recipe Blog
    ~All AL'ers welcome~

  • Every kid is different, but the progress we have seen with DS1's speech since he started therapy in September is amazing. He went in with more skills than your son, but I just wanted to throw out that we too have been just blown away with progress and he is already doing things we had hoped he would achieve by kindergarten (2.5 years from now). I think you are at one of the hardest points right now. The stupid waiting game between starting the eval process and actually getting the diagnosis (or not getting it -- we were also worried about that & not being able to access all the great ASD therapy options as a result). You know there's a problem and you're trying to take steps to address it and you are stuck in this damn holding pattern. I hated it. Same with having the diagnosis and waiting to start services -- so yay for at least getting the speech therapy rolling this week. Hopefully the rest falls into place quickly for you.
    Its really encouraging he has improved so much. I know every kid is different, but hearing others have seen improvements is encouraging. And you completely nailed my thoughts and concerns with the evals. I have known something was wrong for a damn year now (16 mos) and all but two months of that time he has had ZERO therapy (we moved cross country in Sept, didn't arrive here until Oct). I just want to help him and am scared about losing precious time in this window when he is so young.

    I've gotten a really good book an early start for your child with autism. It gives you tons of easy, practical tips to implement in your life to help.
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  • KC_13 said:



    A2TP said:

    Every kid is different, but the progress we have seen with DS1's speech since he started therapy in September is amazing. He went in with more skills than your son, but I just wanted to throw out that we too have been just blown away with progress and he is already doing things we had hoped he would achieve by kindergarten (2.5 years from now).

    I think you are at one of the hardest points right now. The stupid waiting game between starting the eval process and actually getting the diagnosis (or not getting it -- we were also worried about that & not being able to access all the great ASD therapy options as a result). You know there's a problem and you're trying to take steps to address it and you are stuck in this damn holding pattern. I hated it. Same with having the diagnosis and waiting to start services -- so yay for at least getting the speech therapy rolling this week. Hopefully the rest falls into place quickly for you.

    Its really encouraging he has improved so much. I know every kid is different, but hearing others have seen improvements is encouraging.

    And you completely nailed my thoughts and concerns with the evals. I have known something was wrong for a damn year now (16 mos) and all but two months of that time he has had ZERO therapy (we moved cross country in Sept, didn't arrive here until Oct). I just want to help him and am scared about losing precious time in this window when he is so young.



    I've gotten a really good book an early start for your child with autism. It gives you tons of easy, practical tips to implement in your life to help.

    Name of the book?

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

      My Recipe Blog
    ~All AL'ers welcome~

  • Hi,
    Can you increase his speech therapy? And do you believe he may be autistic based on the speech delay?
  • Hi,
    Can you increase his speech therapy? And do you believe he may be autistic based on the speech delay?

    With the dx, maybe. Unfortunately we arent in a position to afford more OOP. It depends on what insurance and EI will cover.

    The speech delay is just one of the signs of autism with him. Some other biggies: speech regression around 15 mos, he rarely points or waves, he has a complex motor stereotypy (in his case it involves all four limbs and his mouth, he has had this since infancy), he loves spinning/running really fast in circles (does so when he is bored...and can do it for a long time), his eye contact and imitative play is much improved since autism was suggested to us six mos ago...but it isnt where it should be for his age. There are more signs, but those are his big ones.


    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

      My Recipe Blog
    ~All AL'ers welcome~

  • Every kid is different, but the progress we have seen with DS1's speech since he started therapy in September is amazing. He went in with more skills than your son, but I just wanted to throw out that we too have been just blown away with progress and he is already doing things we had hoped he would achieve by kindergarten (2.5 years from now). I think you are at one of the hardest points right now. The stupid waiting game between starting the eval process and actually getting the diagnosis (or not getting it -- we were also worried about that & not being able to access all the great ASD therapy options as a result). You know there's a problem and you're trying to take steps to address it and you are stuck in this damn holding pattern. I hated it. Same with having the diagnosis and waiting to start services -- so yay for at least getting the speech therapy rolling this week. Hopefully the rest falls into place quickly for you.
    Its really encouraging he has improved so much. I know every kid is different, but hearing others have seen improvements is encouraging. And you completely nailed my thoughts and concerns with the evals. I have known something was wrong for a damn year now (16 mos) and all but two months of that time he has had ZERO therapy (we moved cross country in Sept, didn't arrive here until Oct). I just want to help him and am scared about losing precious time in this window when he is so young.

    I've gotten a really good book an early start for your child with autism. It gives you tons of easy, practical tips to implement in your life to help.
    Name of the book?

    The books name is an early start for your child with autism. :)https://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X
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  • -auntie- said:

    Ugh. I'm sorry you're in such a hard spot.


    Nothing like spending time with typically developing kids to really make your own child's differences stand out. 

    In terms of speech, those with ASD who remain non-verbal tend to have no speech by age 8. It should also be noted that lack of speech doesn't always equal lack of language or lower IQ. There are nonverbal people with average and better IQ who communicate through PECS, sign and keyboards.

    Did he have a true regression or did he just sort of stall? Sometimes when skills are emergent they sort of come and go in a two steps forward, one step back progression. Regression is pretty rare and would occur more globally rather than just with speech. He might stop self feeding or walking, for instance in addition to losing words entirely, for instance. The prognosis for kids who truly regress isn't as good as for those who don't. But sometimes you need to take a longer view, 6 months vs last week.

    I know one boy locally who didn't use words until he was about 6; he's the baby of four and I know the whole family. DS and I were talking to his mom about his older brother's Eagle Project when he tugged on my leg and said "Hey Mrs. Mom-of-some-kid-I-don't-know, I need to talk to my mom now." He's doing OK mainstreamed most of the day and participating in scouts.

    I don't believe that there is some magical window in which ASD must be treated. Some of the most effective things we've done with DS occurred when he was older.

    It's interesting you mention Cali as a wonderful place. The state is all over the place in terms of services via EI, the RAC and most especially the local school districts. What you experienced- EI based on an "at risk" notation is very different from what my friends who kids have Aspergers and PDD-Nos dxs did. They were told they didn't have "autism" and denied services. It's part of why the DSM-5 work group eliminated these dx's- to help kids on the milder end of the spectrum get needed services.
    When you say no speech, do you mean as in not à single word? Or that they have so little it isnt how they choose to communicate?

    The regressing recently was just with speech. He went from a half dozen words/phrases per day to absolutely none for a week. He is now doing maybe à phrase or two per day. It wasn't a global regression. He had that around 15 mos. That was so much more, and honestly, as his mom it was terrifying to feel him slip further away each day and not know why or how to help him.

    I think the difference with DS in Cali mayve been his age and the timing. He was <2 at the time and it was June of last year, so right after DSM-5 kicked in. I was told by the psych that did his initial eval that until age 3 "at risk" would get him the same services as a dx. It took a while to get services rolling, but they were providing so much more than Virginia is. Here he needs the dx. Period. Interesting to hear Cali wasnt so good with PDD-NOS as i have a suspicion that wouldve been where DS would have landed under the old system. Your saying how much trouble they had getting services is making me really appreciate the fortunate timing DS has had.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

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  • My DS1 has an autism diagnosis. At 27 months he had maybe 5 words and they were all labeling. After 6 months of very intensive speech therapy he is now talking and has 75 words and is actually using them to communicate! I don't know if you have a university near you but if you do that can be a great place to access lower cost therapy. The program my son was in was a university clinical lab for grad students becoming SLP's. The clinicians were awesome and the professors overseeing the program had PhDs in autism communication. Their experience was invaluable in helping my son. In fact we still have my sons clinician come do language intensive "babysitting" once a week to work with him. This program was also significantly cheaper then any other program in the area. I know this is tough being stuck between evaluations, good luck and I hope you are able to get answers soon!


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • DD was dx with severe speech delays. Receptive, expressive, social communication all in bottom one percent. After one year of services including speech therapy she doesn't test as having a delay at all. In fact, her vocabulary like a lot of kids with ASD is insane.

    It's so hard, waiting to get going. Once you do it will help. Good luck to you!
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  • Just called to check on the referral status for D's speech stuff. It was supposed to be all set by now for his apt on Thurs (referral was supposed to be put in on Dec 27) . They have no record of it. Period. And even with a rush put on it, they can't guarantee I will have an answer as to if it were approved in time to cancel the Thurs appt if need be. I'm so livid. All I want is to be able to do something to help our son and they can't put in an effing referral?!?! Major tears of frustration over here. D needs help. Badly. And our hands are tied pending that referral to get it to him. He hasn't seen anyone for anything but a speech eval since Sept...lots of waits for referrals to clear, for evals, for EI to get rolling. Now I finally get an appt scheduled and I most likely will have to cancel it. So upset.

    BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11

    BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14

     

    Lilypie - (2llN)

    Lilypie - (2L9u)

     

      My Recipe Blog
    ~All AL'ers welcome~

  • I'm sorry that you are feeling upset and I've been there.  It is really positive that your son has any form of communication never the less words and word combinations at his age without intensive therapy.  You can help him now by encouraging speech by talking to him a lot, reward him for eye contact, and offer pictures or try some sign language to encourage non verbal communication.  Coming to my mind based on your description of verbal regression and my experience with my son have you had your child's hearing tested lately?  My son has Autism and a history of long term fluid in his ears that didn't present with any symptoms until he failed a hearing test.  His language blossomed once he received ear tubes and fades every time he looses a tube or has an infection.  For encouragment my son had no words and little non verbal communication at 27 months and at 5 he in in a mainstream kindergarten testing above grade level.  He will always have Autism but he is excelling.
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