@cosmicgirlie
I thought some other posts I'd written were pretty difficult, but for some reason, I'm really struggling with this one, having started it 4 times now. And I think that's because I'm trying really hard not to start on the defensive.

Which is, of course, nearly impossible for me.

Noah had his Speech Referral appointment today. He was brilliant, playing with the toys, feeding air tea to the bear, getting wound up when he couldn't balance the tea pot on Lofty, and driving a little toy bus over Speech Therapist's printer. He made his usual noises, said Mummy and Daddy clear as day, gave toys to Isaac to play with, and signed when he'd had enough and wanted to go home to eat. She was pleased to see him signing, and was very impressed by the number of signs he knew.

Ok, even as I'm typing I need to get one thing straight with everyone, because I just need to get it off my chest (mainly because I don't want to shout at those who are just trying to support me). I am not worried about him speaking. I know he will speak. I don't doubt at all that he will speak. I know he will not stay "unable to speak forever". I don't doubt my boy at all, in that sense. In fact, I'm incredibly confident he will speak.

You should also know, I'm not just saying this to fob you off, to shake you off my back. I'm saying it because I believe it more than any of you could ever know. So many people tell me not to worry, he will speak. I'm not worried. I know he will speak.

So what am I worried about? I'm worried, like any other mom who cares, about what it's doing to him until he DOES learn to speak. About what it's doing to US. He is so frustrated. If he doesn't know the sign, he points and points, repeating the same noise over and over again, usually until we're both yelling, shouting and/or in tears. This is a regular occurrence. And that's what worries me.

And I'm pushing this whole issue, because my boy cannot carry on like that. Life in this house cannot carry on like that.

So what happened today? Well I'm not entirely sure. I've come away with the most mixed bag of emotions ever. In short, she believes there is something not right with him. And she suspects one of three things (which I can't entirely remember because OMG how much stuff to take on board).

1) It's a hearing issue, though she highly doubts it.

2) It's a physical development issue (potentially related to his funny eating), which she thinks is most likely.

3) It's a form of Speech Dyspraxia, which if this is the case, will come to light more as he gets older, and she thinks this may be possible.

I feel strangely sad after this appointment. Everyone keeps saying "this progress is good!" which I understand. Everyone says "look! You're getting help now!" which I understand.

I really, really do.

But it's such a horrible position to be in, where you want to hear that your kid is ok but you want someone to believe you when you think something is wrong. And then when someone tells you something IS wrong, you really just wanted to hear "actually he's ok". And knowing that if someone had said "Actually, he's ok", you would REALLY want to have it confirmed that something is wrong.

I know that made no sense.

But I realised today that because of these emotions I'm actually in a no-win situation. Even though...well...we've won.

This is still making no sense.

At the end of the day, though it feels horrible to say this, I'm glad ST said there's something wrong (or in her words, "something not quite right") with his speech development, mainly because I feel justified in pushing as much as I did. Ok I'll say it even though I don't want to, "I told you so". But I didn't want to be right.

So at this point what happens next? Well he has more referrals for other appointments. He will have hearing tests, he has a food specialist appointment (he often gags while he eats) and will have another speech appointment shortly after those appointments. Which will probably be in about 6 months. She believes until those appointments, we need to carry on working just that little bit harder in encouraging him to speak, as we already are, and as I had already long since confirmed in my own mind, he will speak eventually, it will just take a little longer to get there.

The latter I was already prepared for; so many people saying it to me already, as I expect many more will do. I understand. I really do. But sometimes it gets frustrating, I guess, when it feels like people don't really believe me, and suspecting I'm fretting like crazy under the surface. The only thing I'm fretting about like crazy is whether the frustration will consume us all, and how much worse it will get before he starts to give himself a break of some sort.

I'm glad he's getting help now, even if it is a long haul. I can deal with that, because I already know what the outcome will be. I'm not glad that there's a problem. I didn't want my kid "labelled" or anything like that. I'm just glad that I'm finally getting the help and support we all need, which will hopefully make this journey a little easier on us all.

Which I think, at the end of the day, was all I wanted.
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20 Responses
  1. We are in a similar situation with one of our children. Nothing to do with speech, something else totally.

    We finally got to see a professional about it and spent two hours talking about the problem and although delighted that we can now move forward and help our child I still felt helpless.

    I think I was expecting a magic wand. Someone to push a button and tell me that it's all sorted, no more worry.

    But no, it's more difficult than that ... and whilst we hope it will all work out in the end it's f*cking frustrating for all involved.

    Sorry for cloak and dagger nonsense, just the problem is not common knowledge. But I think I know how you're feeling ... even if it's only a bit!


  2. My middle child (then my youngest) didn't speak until he was almost 2 years old. He had his own "language" that his older sister understood perfectly and that we put down to a hearing problem as it sounded like he was getting his phonics mixed up. It's hard to explain but I'll try:

    "baytal" was table
    "nee" was drink (the "i" sound)
    "doe-bar" was bar code (he was fascinated by bar codes and used to peel them off tins of food and carry them around)
    The one word that he did say perfectly was "Jamie" and that was his imaginary friend that lived behind the settee. We have no friends called Jamie so he might not have been saying this word.

    I wasn't overly worried (well, I was - as you are when it's your child) but I'd had bigger medical problems to deal with with my first child and I'd resigned myself to the fact that if he did have a hearing problem then there would be ways round it. We didn't sign with him but he did go for speech therapy and he attended a nursery three times a week that specialised in speech.

    He either grew out of his "laziness" or something clicked with the speech therapy because he's now 16 and you can't shut the bugger up!!!!


  3. Sounds tough! I think I get where you're coming from: even 'though the existence of 'something not right' may have been confirmed, at least you can now make progress. Sounds like you were in a state of limbo, & the not-knowing was worse than knowing anything at all. I'm not qualified to offer advise, so I won't. I did notice in your very cute vlog though that he kept putting his finger on his mouth every time he spoke: could that be significant? All the best, Greg


  4. Just wanted to give you a ((hug)).

    That is all.

    xxx


  5. TheMadHouse Says:

    I agree with Laura, we too have a child with a "condition" and I have stopped fretting, but it is truley frustating and even more so when people offer their own speical advise!

    I hope you get all the help and support you need and deserve


  6. Michael Says:

    Everyone else said it very well. We had a late talker here too, and now he will not shut up.

    I bid you peace, and strength, and patience. And no more hidden poop.


  7. Meredith Says:

    I've been meaning to comment on your blog forever, but ya know...my kid is so demanding and needy! Ha!

    If you replace the word "speak" with the word "eat" in this post, it's exactly how I feel about Reese. I know she will eat eventually, but I'm concerned with what will happen to her between now and then. Will she be mocked? Will poor nutrition be a long term issue? Will she develop esteem issues regarding food and eating? And everyone constantly telling me to stop worrying b/c she will eat eventually does nothing but make me feel invalidated and as if I'm being neurotic. There's nothing "wrong" with my kid, but something just isn't quite right and I have the means to help her and so I will. Big hugs momma...I wish we lived closer and could bitch about this stuff together.


  8. notSupermum Says:

    My younger daughter was a late talker, and after pushing for it to be checked it turned out to be a hearing impairment in one ear. She has had 6 monthly check-ups ever since, and although her speech was late to develop she soon caught up and has no speech issues now. Of course she still has the hearing issue but has learnt to use different strategies to deal with it.

    I hope everything turns out okay for your little boy.


  9. Cassandra Says:

    I found this post heartbreaking to read because I feel so sad that youre going through this. Im so glad you are getting the help you so wanted though and I hope that it does help.
    I cant begin to understand what youre going through here, but I do feel for you, and for Noah, so much.
    Nor can I offer words of wisdom or make parallels of any sort, I wish I could...
    So instead all I can offer is *hugs*
    xxxxx


  10. Amy Says:

    oh my i could have written this post myself. I'm still waiting for 2year old's speech referal but we had the hearning playworker round and she is convinced that her hearing is fine. But now she's concered that it's some sort of development problem like you described which is just frightning.

    I know she can understand what we're saying and it is so frustrating whe she won't 'perform' for the professionals because she is shy. I hate seeing her underpressure and i just want to grab her in my arms and run away as fast as possible. (big hugs) xxx


  11. Gee, I just came here cuz Captain Dumbass said you had a nice ass.

    Snark aside, a tongue muscle problem can be a huge problem for a kid, especially when eating. My son is 18 now, but I can't tell you how many nights I sat with him at the dinner table, screaming at him for gagging on my food. Nobody told me it was a physical problem until the dentist noticed it when she tried to fill a cavity in one of his back teeth. All those years, I thought he was being a snob about food!


  12. Also, what the ST didn't say is that it could be a combination of two of those things. It just makes the OT/ST appts. a little more complex, but still workable.

    And I taught elementary school, so I know other kids like your son. Everyone is right, he will be fine, but he will test your patience until then.



  13. april Says:

    i get it - not with speech, but anxiety. my girl has it so badly tht it makes nighttimes a roundabout of awake and asleep, that it makes her whole life scared and hellish and just to , at the first psych app have someone say 'yes this is not ok' was wonderful and amazingly sad - good because we can do something sad becasue this is my baby...then when the next psych said it was just me and she would be fine - oh how upset i was and still am...she is seeing someone else now - not because i didn't believe i have contributed - its genetic of course i have - but because she WAS NOT okay, not even close, and no child should live that scared...
    blog hyjack - apologies...
    *hugs* to you all


  14. Susie Says:

    I don't know if this will help you, but it helped me when I went through something difficult with my oldest son (completely difficult but also medical related and heartbreaking for me).
    Once I knew there was a problem, and while I worked to get it resolved, I kind of just let go on the worrying and the what if's. I firmly believed that I was going through this with him for a reason and that both I and him had something to learn from this.

    The minute I relaxed and looked for positives at every turn, things got so much better for me emotionally and all worked out in the end as well.

    Hope that gives you some kind of help.

    HUGS!


  15. Josie Says:

    Oh honey :( I warn you now... this will be a long comment.

    I get it. Totally. That weird wanting everything to be fine but also wanting an answer to why it's SO FUCKING HARD!! Of course knowing long term that everything will work out is comforting but it doesn't make it easier right now, and right now it's pretty unbelievably hard work.

    And you WERE right to push. Even if she'd told you there was absolutely nothing wrong you would have been right to push. Because you are his mother, and you love him, and you know how hard he is finding it to communicate.

    The good news... and it is important to try and focus on the positives - all these things she's talking about are fixable, and you're in the system now which means that people are listening and taking you seriously.

    The bad news? There's no instant fix. But we knew that right? There was never going to be. So again it's about surviving. It's about working with what you've got, which is a boy that signs well and is lots of fun, and it's about making the most of what's on offer which is a lot of people to support you and hold your hand on the bad days (me, for starters).

    How ever hard it is now, and believe me I know how hard and some days it feels like you're going to break, however hard it is it ISN'T going to last. Words are coming, slowly. Help is coming, even if that is slowly too.

    You've just got to ride it out honey, te best you can.

    And you WILL. Because you are wonderful and you've already come this far and YOU ARE NOT ALONE.

    Much, much love xxxxxx


  16. Jen Says:

    I wish I was allowed to drive, cos I'd be straight over to give you a big hug.
    Obviously you're going to feel upset and concerned that the ST confirmed that something's "not quite right" - but you already knew that, and more importantly, you have been doing something about it. Surely that's something to be proud of?
    Keep signing, keep doing everything else you're doing to help his speech, and with a bit of luck those appointments will come through soon.
    Sending loads of hugs for you all.
    xxxxxxxxxxxxxxxxxxxxxx


  17. april Says:

    surprise for you over at my blog :)


  18. Lorna Byrne Says:

    Hiya

    So sorry I missed this post when it was originally posted. Not sure exactly how old Noah is but my daughter is almost 2 and is a late speaker. At the moment they are not too worried but if she doesn't use more words soon I wouldn't be surprised if she were 'flagged' as well. Just wanted to say we are all very fond of you on here and like other people have said, you're not alone. Sending hugs xx


  19. I've just stumbled on your blog via the Gallery at Sticky Fingers. So I'm following you now, nasty little stalker that I am.
    And when I read this post I thought "now this woman knows." We've been through this with our oldest (now 5 and a total chatterbox). We'll probably go through it again with our youngest (now 19 months and has maybe 5 words)
    Late speech and speech disorder runs in my family. I had seen it with my brothers, with my nephews. Always boys. When we were going through it I took great comfort from Thomas Sowell's Einstein Syndrome Theory. Google it, as you do seem to fit the bill on that one - musician parent, child who otherwise seems normal, perhaps even bright.
    I can tell you what I know. I know it was heartbreaking not being able to communicate properly with my son. I know I sheltered him and protected him from having to feel the frustration of communicating with strangers who didn't understand him. I wanted to kick a little girl at playgroup who told him "we can't play with you - you don't talk." I wanted to hold him and rock away all his tears. But I knew that I had to make him try - force him to communicate in order for him to learn. That's hard. Speech Therapy will be hard. You will feel your child is being judged, you will feel they are pushing him too hard.
    I know he got angry and frustrated and sad. Oh God, I used to listen to him in his bed at night practicing words, but he would never talk to us - an embarrased perfectionist. That broke my heart, that he was actually embarassed enough to hide and practice, that he was aware enough to know that he needed practice and that he wasn't quite "right."
    But I also know that once my son starting speaking at 3 and as his speech developed over that year, the frustrations were pretty much forgotten.
    Now that the baby is learning to talk a bit, the older two talk about language and we've tried to explain language development to them a little. I wasn't sure how much my son remembered about not having appropriate speech. One day he said to "remember when I was a baby? Remember how I couldn't talk? That was funny, wasn't it?" And that's all he remembers. So even though it's ripping you apart right now, I can tell you from the other side that once the bridge is crossed you turn your back on the land behind.