Speech Therapist doesn't know what the problem is!

Hi girls :)

It's been a while since I've come onto bellybelly, but this was the first place I thought to come to for advice <3

DS turned 3 yesterday. We've had 3 'meetings' with the Speech therapist (from the first to the second there was a 7 month gap due to moving) and DS has been pretty co-operative for her. After our last session though, she told us he had her 'stumped' and she didn't want us to worry (yeah, right!) but with her 10 years of experience she hadn't seen a child that 'presents' the way DS does.

He only says a handful of words clearly, i.e choo choo, mama, car, shoe etc. (there are a few more) but his pattern of speech is usually all over the place. From research I've done I think he may have a phonological delay/disorder. I don't think we're allowed to link here? But if you type Phonological delay into google the website called playing with words 365 explains it quite well. Yes googling is bad, I know :( I'm not sure if it makes it better or worse, but I've come across quite a lot of different things it could be and this fits the most!

Anywho - Speechie said that she has plenty of tricks up her sleeve to try and get him talking which is great, but I need some information! I've been worried about his speech for that long that I just want a final answer with a final thing I can do to help him! - We are also on the waiting list for an occupational therapist.

Does anyone have any experience with Phonological Delay? Has anyone else's speech therapist not actually known what the cause was? Any other information, tips, things to do at home etc would be very welcome.

xx

Don't know about your circumstances but my younger twin is speech delayed at 21mths - he has no words, he had a hearing check last week and has to go back in a month to be reassessed, but from preliminary tests it appears he may have low decibel deafness which means he can understand high pitch and loud sounds. This may be impacting his speech as he can't seem to sound out the different sounds needed to create words. Has your DS had his hearing checked to make sure there is nothing wrong.

Thanks for your reply Tarhli, his hearing has been checked and it was 100% so I know that's not the case.

Up to the age of 3, speech delay is quite common. Next to some speech-delayed 3yos, your child would look pretty advanced.

Phonological delay may be an early sign of dyslexia. How is your son doing with listening to and following instructions?

Also, can you understand him? If you can, then in time he will be clear to others too. It just takes a bit of time for some children to be able to speak clearly.

Hi lb (I'm a speech pathologist myself :))

I'm sorry to hear you're having such a drawn-out, not-straight-forward diagnostic process with your DS' speech. I appreciate that you're confused and perhaps a bit frustrated at this point. Is your DS frustrated with his speech at all?

Can I say from the outset: forget cyber-diagnosing!! If your DS had an obvious phonological delay/disorder, I assure you that the SP would be able to use that label and appropriate treatment strategies for the same. And you know, if you got a second opinion (in person ;)), maybe that's exactly what the next SP would diagnose? But not all developmental speech problems are so obvious and sometimes a diagnosis is hard to reach and sometimes it's a matter of trying a raft of treatment strategies to see which is most effective for creating correct stable speech.

It's unfortunate that the SP has appeared under-confident with your DS' presentation but IMO your best options are to 1) seek a second opinion, 2) ask the SP to consult with a developmental speech sound specialist, or 3) start with the therapy that your SP prescribes (leave google alone ;)) and see how it goes for a few months - you do still have lots of time to correct speech sound problems before they impact on reading development.

Good luck!

TFB - Thanks for the reply :) He listens and follows instructions really well, there are no other symptoms other than his speech being almost non-existent. He babbles a LOT. And I can understand him only 1/4 of the time, and most of that time is just that I'm used to his patterns and sounds rather than whole words.

Spiceoflife -Thank you for your reply, it's nice to hear from a professional that there is lots of time to correct the problem before it has an impact. I am a bit worried about that!
I think I will be getting a second opinion, and I promise to stop googling lol! I'm just not sure what to do with him while we're waiting for the SP to actually come up with a therapy plan!

My DD1 has been in speech therapy for over a year, it took a while to actually get a firm diagnosis but I was told that often trying treatments helps highlight the actual issue based on the response. It was always presented as normal not to have a diagnosis straight away and that it wasnt neccesary to begin solving the issues. Nothing really changed for us by having a reason, our speechie just trials and errors different strategies to see what works and it is often more related to DD1s personality than her label.

We were instantly comfortable with our speechie though so trust your instincts.

Thanks Jellyfish.

Our Therapist told us on the third visit normally she can meet a child once and have a pretty good idea of what will and won't work. Which is what threw me off, I guess.

We've since had another session with the therapist and she did a 'formal assessment' for a 2-2.5 year old (he's 3) and he didn't pass. Therapist told me that she's confused by him because he has the speech delay (learned words aren't clear and most of his 'talk' his babble), learning delays (didn't understand simple instructions like put the block IN the container etc) and some typical autism symptoms (jumping, fixating on small parts (knobs on the play oven that was there), obsessing and not responding) He has fantastic eye contact and shows empathy well though she noted which makes her think that he isn't autistic.

It's not even about the label, though. Because you're right, having a 'reason' isn't going to change anything... I think it's more the fact that no one has told me how to HELP him. We tried getting him to make sounds and he did really well, that was our homework for one session with a two week break. And homework for this week is to write down what words he can say and how he says them. What can I do to help him? I feel overwhelmed and out of my depth. It's really hard to try and diffuse his tantrums and calm him when he's upset because he can't communicate with me. I'm tired of seeing how different he is to other children, and how desperately he'd love to be able to say the things they say. I want him to be able to tell me why he's upset, or ask me to play.

And I feel like no one knows how hard it is, everyone keeps telling me that he'll grow out of it soon and be talking before I know it but they've all been saying that for over a year. :(

Hi again lb
I'm so sorry that you feel this way. Gosh, we take communication for granted, don't we? It makes such an impact when it's not going well.
Part of the difficulty, I'm sure, is that speech/language/learning is notoriously difficult to isolate. It's just not like a headache that will be fixed by some paracetemol, or an infection that will clear with some antibiotics. There might be some things that the SP prescribes that will have an immediate effect on your DS' speech, but most of it will be 'help' that you give him over the long term with only slow, gradual effect.
I know this sounds like a non-committal answer, but let me say that you are helping him already!! You have A) noticed a problem, B) sought help for the problem, C) sought help from the right source!, D) followed through on appointments and homework, E) committed to finding best solutions - that's 5 steps ahead of more parents than you would think!
The only other advice I can give, and I know it won't be new to you, is: don't discount the importance of regular-constant verbal interaction with your DS (conversations, directions, arguments, story-telling, rhymes...) - even if there's a breakdown of communication on either side, you are emphasising the value of verbal interactions, creating a need for him to speak (and eventually speak well). Your best 'help' to him is to keep talking!!

Hi littlebear.
Many children I work with have a diagnosis of autism but don't fit the classic stereotype (ie poor eye contact). This often leads to difficulty in it being diagnosed if people haven't specialized in the area. So it could be worth having a child psychologist or paed or another speech pathologist (if yours doesn't specialist in autism diagnostics) to conduct a formal autism assessment. Autism sa would prob be able to list professionals who could help. An organization in sa who may be able to offer some direction also is Isadd but I don't know if they could provide the assessment could always ring and ask them though.
I hope you can get some direction for helping your little one soon. He is still young and with the right early intervention will have lots of potential to reach his optimal development.

I would definitely still look at getting him assessed for a spectrum disorder, it might not be autism but there are many other options that present similarly.

It is really hard. I understand completely. I cried a lot at first, grieving for my daughter because it does make things tough for them. Would she ever play with other kids and make friends? Will she ever say mum? Or I love you? The first thing we did was learn sign language (our speechie taught it to us) so that might be something worth discussing? The other option they offered was certain apps for things like iPads (we didn't have one) or even just sight cards so that they can learn to express their needs in pictures. We found signing helped us 10 fold, we had a lot less frustration and misunderstanding - we started with simple and useful things like 'finished', 'more' and 'help' and then expanded as we needed (clothing, food, transport, places etc). She learnt 100s of signs (and us too). I think that should be the first thing you work out with your speechie - if we can't communicate verbally, is there another way we can in the mean time?

I'm not sure how things work if there is also a low receptive language as in our case DD1 had an above average ability in this area so had no problems following instructions to learn to sign etc. Once we began learning, we noticed ways she had been signing to us all along so that was eye opening.

You most definitely are already helping even if you don't feel it. Just engaging verbally, reading books... it all helps. The best thing you can do is just engage, engage, engage. And have a lot of patience.

We started speech at around 2.5 when my daughter had no words. She also never really babbled as a baby (she was my first, we never realised till after the fact how odd that is). By 3, with 6 months of speech behind her, we were communicating although not verbally - signing changed our lives. She is now about to turn four and in kindy (QLD so half weeks the year before full time school) where they have no problem understanding her verbally although some of her sounds are a little unclear and in need of polishing - I never thought this would happen, if you search my posts you'll find one about me stressing about her going to kindy. She still goes to speech once a week. It felt like forever to get to this point and then it all happened really fast, it was like the word explosion most described their children having at 2, ours was just quite a lot later. She now speaks sentences, tells stories and sings songs! There were points I thought she would never be verbal.

Now we are actually looking into spectrum disorders ourselves so I think her initial speech diagnosis wasn't even correct but we are getting there anyway.

It is a tough ride. Your son is different and that's okay - we all are to some extent. It is okay to grieve, to be upset about the challenges he might face because of his impediment. To have days where it is hard to be hopeful. I now have another DD who is a year old and I feel like I'm grieving all over again watching what a normal babyhood is. My DD2 seems so old compared to what my DD1 was at the same age which is also hard. But it is a very fulfilling journey too that makes you appreciate the little wins, my daughter has taught me so much and she is so beautiful and unique and special. Your son is too. It'll be hard but it'll be okay too :hug:

Thank you so much girls. I think I'll save both of your last comments Jellyfish and Spiceoflife to come back and read whenever I'm feeling hopeless. Very encouraging and i really appreciate it you almost made me cry! It's nice to know that others have been through what I'm going through and that I am doing something to help even if it doesn't feel like it.

He is seeing a occupational therapist in the first week of march, who I'm assuming will be able to give some insight into a spectrum disorder. Depending on what they say I think I might look into that a bit, but I can understand how hard they are to diagnose though seeing how much the attributes can differ!

Thank you for helping me to see the light at the end of the tunnel, even if the train is driving really slowly.

Just thought I'd update for anyone who is interested.

Saw the OT on Wednesday. She asked a lot of questions and got DS to do a few things and suggested that he go on the waiting list for a diagnosis for Autism. They explained that he had some things that were classic autism and others werent' and that his over all development was patchy, meaning he could do age appropriate things in some areas and other areas were severely delayed. So it wasn't a clear case of anything, they said it could be that it's Aspergers but given that he's only 3 it looks like Autism (and will go into aspergers as he grows), or it is a mild form of Autism or best case scenario he's got a language delay that is showing signs of Autism that will go away. In the meantime we'll have regular therapy sessions and a little play group with kids similar to him which I think he'll love :)

Glad to hear you've got a game plan littlebear! Hope your DS goes well. My DS is 3 tomorrow and he's also got a delay, and since going to cc and speech therapy he's made such good progress. We are also going to early intervention as well. He's been diagnosed with a developmental delay (mostly in the speech area) as he doesn't have the classic 'autistic' traits, although he does have some quirks. Keep us posted on your DS's progress :)