Support thread for speech and laguage delay toddlers...

[Orangeflower7]

Hi, I have a little boy of 2.5 and we have just today had our first speech and language referral appointment as he is not saying many words yet. I thought maybe other parents might be in the same position and would like to share experiences for support?

It took a few weeks for the appointment, which we were referred to by the health visitor. The therapist told us he has a moderate language delay and has given us ideas of some signs to use with him, she has advised us to keep language clear and simple and we will get a place at a toddler group run by speech and language therapists who will observe and support us. Not sure how long that will take as they only have 6 children in a group but there is an option we can go to the next town if necessary. He also had his hearing tested by the hospital audiologist last week and they said his hearing was fine.

Arrogantcat, sadly the system seems to be so bad - worse in some areas than others - that a diagnosis of ASD can actually ensure your child receives more support in mainstream. It can then be so much easier for professionals and schools to pretend your child is coping and avoid spending money on one to one support.

Many diagnoses are then lifted when it becomes apparent that they are not (or no longer) appropriate.

There are pros and cons though - for example certain professionals hear ASD and make a host of assumptions, eg they are 'visual learners'.

However, please don't write it off completely and start battling against that when there are potentially so many more battles awaiting because of crap bureaucracy.

Sorry, I meant easier to avoid giving support when there is no diagnosis.

Arrogantcat We were on the waiting list for simply ages for NHS assessment. We had another hearing test, which was fine, but then nothing was happening and DD was getting older and older and falling further behind. In the end we went private and DD was assessed (for two hours on and off) last week by a very experience SALT (who also does NHS work but in the neighbouring area) and she'll now have weekly sessions.

The SALT recommended half hour sessions as it'll be difficult to get a three year old to concentrate for an hour and she'll also go into the school nursery.

I'll let you know how it goes! She recommended starting jolly phonics, which I know seems a bit bizarre to advance them like this, but she said it'll help with the sounds.

Hi again, I have been going through a rather difficult time, feeling so worried about my DS and his slow progress, and losing sleep etc over this, but am trying to cope with whatever comes our way. He says words all the time now, and responds when you speak to him, but it is almost always ta, car or da if it is not made up stuff of his own.

Today the nursery told me that they are moving him up to the bigger children's room (he is 2.3 but has stayed in the under-twos room to now). I am in two minds about this. As he does not talk and is pretty small (prem and IUGR baby) I am a bit worried about him being pushed around by the bigger/vocal children. However the nursery head lady seems to think that more structured activities/art/little lesson time etc (which is what they do in the over-twos room, as opposed to just playing basically in the under-twos) will do him good, as will being with children who are talking. I suppose having the expectation of his being a bit more advanced (I think sometimes I am guilty of treating him too much like a baby!) may be good. I don't really know. I suppose we shall have to see.

theDudesmummy I'm so sorry you've been having a tough time. I totally understand all your thoughts as have been exactly where you are.

My son was moved up a room in nursery and I felt exactly the same as you. As it turned out, I personally don't think the older children's room was helpful for him. It was easier for staff to let him play on his own as he was no trouble that way but would not participate in the group activities. The staff had no training or experience with SN or speech delay so were at a loss really.

He would tantrum when an activity changed and they found visual cues for the next activity helpful but never got much further than that. The SALT and the lady from Portage went in to observe and give them some tips which helped. Some staff were very keen but they struggled with him.

In short, I think he should have been left in the younger room for longer, but it was probably just delaying the inevitable really.

Can you self-refer for Portage in your area? Also can your SALT work with the nursery?

Now here's a piece of impossible advice and I regularly fail to practise what I preach: try to stop ALL comparisons with other children. Apart from ensuring you are seeking all possible help and support for your DS, which you are, they serve no other useful purpose.

If you possibly can, use comparisons only with what your DS used to do, ie to show he is moving forward. Progress might be painfully slow, but it WILL happen and each little crumb of it should be celebrated.

Hi thanks for that. The nursery is a very good one and has a high staff ratio (3 staff for max 8 kids) so I am hoping they will be able to work with him, but I am keeping an open mind and if it does not seem to be working out I suppose he could be moved back again. The SALT (I have a private SALT seeing him) is going to start going in there and in fact will be there this week. I don't know about Portage, is that available through the Local Authority or NHS?

I am trying very hard to stop the comparing (and reading or googling anything to do with milestones) but you are right, it is very hard. I have friends whose children all seem to be 100 years ahead of the curve (apparantly), and who seem to have learned to read, write and quote Shakespeare before they were 2. It gets annoying!

Hi All,
I have read this thread with interest as I have a DS who I worry about. He is 2 and has no discernible words and apparently little understanding.
DS1 is 9 years older and was an early talker, hitting all his milestones on target. DS2 had a very quick birth but was born with a knot in his cord that was also wrapped around his neck; he was a nasty shade of grey when he was born and had to be rushed off to be resuscitated. We were reassured at the time that he was fine and, apart from a very large tongue that protrudes most of the time, he is fine.
He is generally a very happy, energetic and engaging child, full of laughter and bounce! He babbles constantly and very occasionally he says a word totally clearly; "oh wow!" is a common expression of his. But he has also been heard repeating the end of a sentence perfectly. He does not call me or DH mummy or Daddy and has no word for his brother. He appears to have no understanding of the words he does say he just seems to "parrot" them. He will not copy words or sounds that we use, for instance when reading to him. Having said all of this we, as a family, all understand him perfectly and he rarely tantrums. We understand his actions and gestures but he also uses a lot of sounds, if not words, to communicate. His childminder also seems to understand him, though she couldn't tell us how, she says he just seems to make things clear. He loves to play with other children and appears to be gentle beyond what you would expect from a two year old. But again he does not have the language to communicate with other kids so unless they know him they do not tend to include him in games.
My DH and I have noticed that he sometimes "zones out" - he seems to go into a deep daydream that it is very difficult to snap him out of. He only occasionally responds to his name, he will happily wander off in a crowded place and not panic if he loses sight of us (I have followed him to see what he does and he just seems to keep wandering around, I would never just leave him without supervision!).
His tongue remains protuberant but does not seem to interfere with the sounds he makes.
I and my DH remain determined to treat him as normal but I think that we both secretly worry that there may be something more to it.
Ooops, Sorry I didn't mean to go on like that it just all seemed to come out once I started, its nice to know I'm not alone and that there is constructive help out there should I wish to find it. First I think I will get a hearing test sorted out for him.

Dudesmummy - not sure but here is a page to find your local service

Your health visitor can point you in their direction but I think you can still self-refer.

Wartsanall - have you been to see your health visitor? Has he had a 2 year (or thereabouts) check?

Schobe, hi, no not yet.

I'm trying to be as relaxed as possible about all of this, I come from a very big family with lots and lots of children so I know that there is huge variation between toddlers. I'm not so much concerned about the lack of words as his communication is actually fine. It makes it easier to ignore the other stuff as he is such an easy toddler who is happy and content.

I'm struggling to ignore the zoning out and apparent lack of attachment and understanding. Today, while he was holding my hand, he spotted someone who looked a little like me and sprinted after her, he seemed so confused when I caught him and he realised she wasn't me. Though he does recognise friends and family and is normally overjoyed to see them and me. He has never really had any separation anxiety though. I feel that these are such vague concerns that its going to be difficult to explain the HV.

I don't know, I think you've explained them very well! You may as well try the HV and say exactly what you've said here, including the fact that you're very familiar with babies and toddlers and unlikely to be hysterical about small things.

You just want it kept an eye on and to see what he/she thinks. Also they might refer to a SALT to see what they think. As I always say, it certainly can't do any harm even if totally unnecessary.

Brilliant that your DS communicates even without many or clear words though.

schobe, your advice re comparison is very wise - every time I compare, i end up blaming myself, worrying etc and it just isn't worth it,. Ultimately, I know I have sought the help DD needs ( even though many people told me to wait and watch) I try to use the stategies I have been given to help, and most certainly, I try to celebrate the littlest steps - the nursery thought I was potty yesterday when i burst in announcing that DD had suddenly started using 2 (repeated) syllables on a couple of words, and had twice strung 2 words together and made sense! This was hiuge for us!

It isn't half hard to stop yourself comparing though.

You have to find the right audience for those small victories. In our case, erm, well, just me and DH basically.

So few people get it. If you find people that do, then hang onto them!

I agree it's really hard not to compare. I find myself doing it all the time in parks and playgroups. I am obsessed with how old other people's children are and their speaking abilities.
My daughter is such an easy-going, sweet little girl. If only someone could tell me by the age of 5 she'll be talking like an average 5 year old then I could stop worrying and just enjoy her.
I am concerned that since she was referred to SALT aged 2.3 she has been assessed by them on only 3 occassions and that's all they've done. She has just turned 3 and has received no actual therapy whatsoever. Is this usual?

I found that too. SALT put me on a course but have actually done no work directly with DS

I was unimpressed so hassled the paediatrician about how his nursery weren't coping and she got him a place at a special school nursery. Just like that and he was still only 2 and a half!

I find you need to push and push and become a bit of a nuisance to people. Try to identify the people that actually make things happen - in our case the paed. She's obviously a big cheese - when she's picked up the phone, things then often seem to happen quickly.

The special school nursery is fantastic. Lovely staff, high adult to child ratios, SALT in regular attendance, physio, OT etc etc.

I'm not saying SS is good or necessary for everyone, but I read about people much further down the line battling to try and get their DC into the special system because mainstream is failing and I'm so glad we went down this route.

Shobe, Thanks it does help to write it down-it clarifies some vague ideas that I have. I agree that it is very hard not to compare, even when you know that madness lies that way! I find that I'm constantly comparing the way my DS runs (a little like an orangutang! is that too unkind?) to other toddlers who all seem so coordinated.

I love my little DS and will fight for him tooth and nail when I need to, and its great to know that there are other parents with the same problems out there. But I think that I will give him a few more months to develop before I turn into pushy parent numero uno :)

Thanks for the very good advice

"the nursery thought I was potty yesterday when i burst in announcing that DD had suddenly started using 2 (repeated) syllables on a couple of words, and had twice strung 2 words together and made sense!"

LOL I can remember doing something sooooo similar when DS2 was 3.6. I vividly remember exclaiming in the nursery playground how brilliant he was for the achievement (which wouldn't have been an achievement for a typical child), I remember seeing people stare out of the corner of my eye and I remember realising that I genuinely didn't give a toss what they thought. I think I even felt a tiny bit sorry for people who had boring talkie-kids instead of lovely DS2.

Crikely I must have been into it all!

I think it's nice for the other parents to see us celebrate our milestones in public - they get to see that we think our kids are the best in the world. I think someone made a nice remark afterwards like "oh your DS2 looks like he's had a good day" - so I guess it got her over the "I don't know what to say to that lady" issue.

hi wartsanall

hearing test sounds like a plan, hopefully that will clarify whether it's a hearing issue or language development issue for you.

we were also a happy family and wanted to enjoy family life rather than think of DS2 as a child with "problems". It was sometimes tricky to keep that spirit but we managed it. For me, it was about staying in charge and being recognised as the expert on DS2 . I guess it's different for everyone.

also sorry to write about something I don't have experience of but might you want to get a GP to rule out little petit mal episodes (the zoning out stuff)?

Hi Lingle,
Love your story about public exclamations on milestones and treating DS2 as normal, made me smile. I never mention to others about my DS2 lack of speech or his protruding tongue - occasionally people ask and I just shrug and say its normal to be eccentric at his age :) I don't want him growing up with a complex.

We have a standard 2 year HV check on the 20th so I'll raise my concerns with her then and try to be as articulate as possible (not a strong point of mine - perhaps he gets it from me?!)

The paed we saw last week has referred our daughter for an EEG because she rolls her eyes sometimes. She does not zone out though so we are not expecting it to be due to petit mal episodes.
We felt the appointment went really badly at the doctor seemed to be enjoying making us worried about our normal, quirky but speech delayed child.
We have decided not to follow up the next appointment and to stick with SALT sessions.

Hello everyone.
My son started speech therapy at 24.5 months because he says only about 40-words and no two word sentences and learns a word or two weekly. The words are incomplete but I understand him. He understands what we say and can follow instruction. He met all other milestones and is advanced in motor skills and very physically active. However, he is shy and takes a while to warm up to strangers and will totally ignore them. He makes eye contact, plays appropriately with his toys and is often affectionate. After 6 weeks of therapy they tell me he needs to see a Pedi that specializes in developmental delays as she feels he is "significantly delayed" nad used th term "stimming". I am a Nurse and I know she is implying he has autistic traits. She also implied he has attention problem and alluded to attention deficit. Hm, how long does a 2 year old focus. I asked her to be more specific because I never noticed him doing that. He focuses on the wheels of his train pushing it back and forth. Huh, what else is one supposed to do with a toy with wheels. I never witness this behaviour because parents are expected to sit out in the waiting room during therapy session. I was told after each session "he did great!" for six 6 weeks , no mention of odd behaviour. She also stated he flaps when hes excited. He has flapped his hands with me only a handful of times over the last two years. Also, in the 6 weeks hes had 3 different therapist and they only can give us appointments at 530 pm, not the best time for a two year old. Needless to say now Im upest about this whiole thing. Does anyone out there feel Autism and ADD are overdiagnosed and every deviation from "noramal" is pathologized?

Arrogantcat - I'm sorry the paed made you feel that way.

Please don't drop out of the system until you've given it a few chances. I know how hard it is, but it's worth accepting all and every support offered so you can pick or choose what works for you and DD.

I find you need to develop a thick, thick skin. I'm listening but I almost zone out in my own head and laugh internally at, for example, the HV's desperate attempt not to be the first to mention ASD. And then her obvious relief when I mention it first.

You can see the way they think they're 'handling' you (or not in the case of your paed) but you can let it flow over you, honestly. I just sit with a smile and am uber-polite - they probably think I'm an idiot (at first at least).

Then you'll know years down the line that you pursued every single avenue as far as you possibly could and your DD couldn't possibly have missed out on anything.

My little brother was diagnose with epilepsy when he was a toddler, turned out he just had very sever temper tantrums, luckily my mum told them where to stick the medication they wanted him to go on, he is now a pilot. My other little brother refused to walk or talk till he was well over three years, he is now a stock broker... I could go on, my point is that as a parent you are the best placed to decide what is acceptable behaviour in your child. Problem is that when faced with many officious, qualified and well meaning professionals it is very hard to have the courage of your convictions.
I had no idea that they did not like parents to be present at therapy sessions , looks like I may have to become pushy sooner than expected.

Is flapping bad?? my DS flaps his arms all the time especially in frustration, why is this bad?

I hear lots of stories about little johnny who couldn't do x, y and z until he was 10 but is now a theoretical physicist.

I'm not that willing to base my efforts for DS on a sample of one or two however! Hearing 'positive' stories is nice but is often almost just another form of comparison, which doesn't help our, totally unique, situation.

I try to keep an open mind on everything. I think this thread is turning a bit anti-medical professional, so I might be better buggering orf tbh.