Grieving lost years because of speech delay

[Bitsyvonmuffling77]

DD has just turned 3 with diagnosed speech delay, we are in private speech therapy sessions as well as support with her nursery.

In the last 6 or so months the gap between her and her peers just feels like its gotten so wide - when we have playdates I feel really down for a few days after because the other children are so chatty, that delightful squeaky toddler chit chat that's a bit nonsensical and adorable.

I am so proud of DDs progress but I feel like the toddler years have slipped by and I am going to miss it all.

Does anyone else feel the same?

Yes, I have been there and can empathise. The lack of chit-chat can feel like a hole in your relationship, and it can almost feel like there's less of a bond because of the communication problem. Obviously, this is not the case, but it is something I used to worry about at the time. I'm glad the speech therapy is helping; spoken language is such a key part of human interaction, but taken for-granted by most of us.

I remember this well. DD didn't speak u til she was 3.5 (undiagnosed ear issues) and they were long, lonely and silent years.

She's almost 10 now and her endless chatter never fails to warm my heart ❤️ sending you a hug OP.

Believe me that speech will come. I would honestly say in the next six months so keep the faith. The day my son sang a nursery rhyme to me I bawled my eyes out when I left the room

ok it was far from perfect but all the times I’d been singing it to him he remembered what he could

❤️❤️

My son is non verbal at 4.5 to be honest I can't hang out with typical kids that much I just find it quite hard and I don't want to spend my life comparing. I know my son isn't on a normal path

My daughter was constantly babbling and could say ten recognizable words and a similar number of recognizable names by her first birthday. Instead of progressing she regressed, and by her second birthday had only two words.

Playdates were heartbreaking. And for a year no one would pay attention to my concerns.

She's had some speech therapy. Her speech is still delayed and very unclear for her age, but at 4.5 years she's constantly chatting, adults can understand half of what she says, children can understand far more, i can understand nearly everything even if it takes a couple of tries, and she's going in the right direction.

I'll never forget the fear and quiet when it was at its worst though, and I'm so sorry you're going through that now. Hope you too have to one day beg your child to be silent for 30 seconds so you can actually think! [Flowers]

Also, I should have mentioned: I think the speech problems have had a lasting effect on my daughter and it's a lovely one. She's SO kind and patient with other people, children and adults.

She brightens the day of a friend with dementia even though he doesn't understand a word, because she can chat away without needing answers. And she has a heart for children who are looking left out or sad.

I do still grieve sometimes for these difficulties. But I'm not 100% sure I'd go back and change things, even if I somehow could.

I used to leave baby and toddler groups and sob in the car with DD2. That horrendously slightly terrified face adults would throw at you when she would start trying to engage with them and they couldn't understand her - sticks with you. She had I would estimate (as her mum - so the most tuned into her speech that there was) about 25% intelligible speech when she started school and I felt so terrible about it.

Now, she's 10, she holds her own academically - she has diagnoses of dyspraxia (I feel, although not officially diagnosed, that dyspraxia also affected her motor speech programming which was what caused a lot of her difficulties), autism (mainly just in terms of anxiety and need for routine with odd bumps navigating social friendships) and probably ADHD - but she's working at expected level, can tell you about Pokemon for fucking hours, reads incredibly fluently at greater depth and is doing amazingly. Won't lie - there are still a couple of speech sound substitutions that creep in out of habit (she can make the sounds fine), and she drops some consonants out when she's speaking quickly and her intonation can be a little unusual at times - but I hear it more than most because what we went through with her drove me back to uni to retrain as a SALT myself.

There are many many many years of childhood talking utter nonsense that you have yet to come (pray god they don't discover squeally YouTube drivel) and you will get.

I used to hear children talk and burst out crying. I isolated myself so much because i was jealous and felt robbed of something that seemed to come so easily to everyone else. I avoided all groups and children in general. He's 11 now and even though he caught up and talks, i had such a negative experience for so long around his development so i completely understand and hear you. Its fucking hard.

My dc is 11 now, but spent around 3 years in a speech and language unit. At one point, I was consumed with jealousy when other dc his age were able to talk so easily. My best friends child was abke to resite the alphabet at 18 months, my dc was 11 weeks older and could barely make a sound. We were in a group chat and our mutual friend was talking about how clever he was. I felt like I'd been kicked in the stomach. That said, I wouldn't change him for the world. He is such a lovely boy. His speech has come on leaps and bounds, and he has been back in mainstream for several years. The best thing I did was try not to compare him to others. Appreciate them for who they are.

These posts have given me hope for my nephew he will be 4 in September and just babbles and says about 10 words , still no clear diagnosis . He understands everything but is getting frustrated now as people can't understand him

I did at the time. But I have two boys with language disorders. One didn't talk until he was about 5, the other at 7.5. I'm just over the moon they did talk eventually but they are 15 and 11.

Being non verbal at 7 and wondering if your child will ever talk was hard. But I can remember his first words so clearly ( a sentence). I asked the eldest and he said he wanted to talk but didn't know how to, but always felt safe and happy around me meeting his needs. So take comfort from that.

His first why? Question was at 5! I never forget that either and I know now he was thinking why? From years before.

I completely understand.

My DS is 7 and started reception at a speech and language resource base with an EHCP due to a severe delay. He had now largely caught up both with his speech and academics but 2-4 years old were soul destroying. I too struggled spending time with other people's children, people moaning their kids wouldn't stop talking, anecdotes about the funny things their kids have said....

I too now worry ironically that I spent far too much time worrying and his toddler years passed me by in a mixture of sadness, anxiety, worry, frustration and stress. Easier said than done though.

Also, my advice would be apply for an EHCP before school starts. Especially if you think you may want specialist provision.

Solidarity Op. it's hard :(

My DD has verbal dyspraxia. We were told she was one of the most profound cases the experts had ever come across, at age 3, but ten years later, she’s a complete chatterbox.

I do remember those feelings very clearly. It used to upset me so much hearing other children speaking. DD was always very chatty at home and very inquisitive, but it was all just babble.

Try not to let it get you down. Easy to say, I know. Continue what I’m sure you’re doing - chatting, reading together, playing. You’re not missing anything really by still doing these things. Keep up the play dates and just live life as normally as possible. It will work out.

My son was the same - but I never cried about it or felt isolated!

I knew he could understand and whilst he wasn’t talking he was listening -

Kids who constantly talk aren’t listening!

Not all children do understand. My ds did not. There was no communication at all, what we said just elicited no response. It was brutal and painful and I can still remember specific moments when I felt the worst kind of horror at the realisation of the gulf between his ability and that of other children. It was the hardest thing I have ever gone through and I think people who haven't lived through this have no idea how painful it is.

ABA speech therapy (conventional speech therapy did nothing for him, they couldn't get his attention) and calcium folinate supplementation (tested positive for FRAA) have improved his communication skills so very much but the gulf is still there. But he has speech and can communicate to a large extent and we are so grateful for that.

Of course, no one understand how lonely for a mother such experiences can be and how painful but I think this is why nature have us being mother before 45 so we go through things and mature and realise nothing is really that important from the outside world, but our own little ( or big ) family is all we have and this is where our focus is to be, no matter what.

@HumphreyCobblers where do you get your calcium folinate please and what dose? I haven't heard of that helping before.

Quite often the DC just needs grommets in their ears

It's amazing how many DC slip through the net re speech delay just because they can't hear properly and all they needed were grommets

I empathise. DD was nv until she was 7. She was the cutest toddler but I would have loved to hear her toddler babble. Having said that, though, she went from NV to speaking in full sentences and a speaking part in the nativity in less than a month. So you have THAT to look forward to, which I think is better imo

Cripes I've just read all of these and seen how far things have come! We all thought my brother had delayed speech, turns out he was deaf but it was an ear issue and fixable. He was 3 or 4 I think?

He bimbled around with eight (yes eight) sisters who mainly just gently took the mick out of him (with compassion and we always understood what he was trying to say and helped him). He's 30 now and just fine, no lasting issues, he caught up and wouldn't shut up!

Two of my nephews didn't speak enough at certain milestones. They ended up speaking at length and very well when they decided they wanted to.

Is your child happy? If they're happy then don't stress yourself. Easier said than done I know.

It was a difficult process tbh. First I read the studies that showed potential benefits with language delayed ASD children, then found a doctor with expertise who would prescribe. He supervised getting a private test done for Folate Receptor Autoimmune antibodies. Then as DS tested positive he prescribed the folinate and our NHS paediatrician prescribes it (it is expensive for an individual to buy despite being a supplement rather than a medication iyswim). We saw benefit after about three months and he continues to improve. My child's speech delay was profound in that he had very little non verbal communication either, this has improved so much too.

Sorry I can't seem to link the studies but if you google Folate/ASD/language they are easily available and very interesting. Although my NHS paediatric team have been supportive I know other people have found the process difficult if not impossible to navigate. It seems to be a more accepted treatment in the US.

Thank you everyone for your stories, I think its a bit taboo to discuss feeling any sort of disappointment but happy to see its not just me!

One of the first things we checked were her ears. She is a gestalt speaker which was a bit lifechanging when I found out what it was and then how to communicate with her.

Hi when did he start to talk?
mine is almost 8 and is still not really talking.
It really does feel like years have been stolen from us.
Any advice and any tips that could help us?