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.

I was hoping for support and help from my child from our recent paed appointment. Instead we got a doctor who treated us like idiots because we are optimistic and positive that our daughter (aged 3) will catch up with her language.
I don't want to sit in an office with a "professional" contantly asking me if I'm worried yet. I'm worried that this quack is our allocated doctor but apart from that I didn't expect to be asked if we thought DC might be autistic after the first 5 minutes of our consultation.
The whole experience was traumatic and upsetting.

In all professions there are good and bad practitioners as well as many who are just average. Unfortunately the bad ones are memorable, the average ones, not so, and the good ones hard to find.

Arrogantcat, you have my sympathy. Your story kinda sums up why I have not sought advice regarding my DS lack of words, yet. I'm not anti medicine I'm anti doctor centred medicine.

schobe there's anti healthcare professional and then there's total frustration with the NHS! Whilst I'm sure everyone on here is delighted we have the NHS and mostly think it's a wonderful thing, the way it operates can leave you exasperated and it's easy to blame the healthcare professional rather than the system.

Personally, I'm very thankful for all the healthcare professionals but just wish there was some continuity of care. Each time we seem to see a different SALT, GP, audiologist, HV or ENT person and you start to feel like it's a first assessment over and over again with no one getting an overall grasp of what's going on. We now finally have a Paed who is overseeing stuff, but I still feel she's so bogged down by the system that it's hard for her to really dedicate the time to analysing the endless reports from all other professionals. It feels like you walk in the room as she's skimming the folder ready for you appointment. Hum de dum.

I guess we as parents have to act as the advocates for our children and cannot simply absolve ourselves of responsibility thinking the NHS will look after it all. We need to learn to navigate the system, find all the resources we can and go for it.

If we do leave stone unturned, we may well regret it later... From the research and statistics I've read speech and language delay is often a sign of learning difficulties be it something simple like dyslexia, auditory processing problems, or something that can be more complex like ASD. However, what is absolutely clear is early intervention is best.

It is hard and it is frustrating to keep having to push and push and push. I can totally see why people get hacked off at healthcare professionals, but would worry is someone decided to shut themselves off from appropriate healthcare because of it. I'm not sure that is really helping their child or themselves.

Personally I find using my stress / anger with the whole situation as a sword for fighting for my DS gets me furthest. When I turn it in on myself we all sort of implode. Everytime my mind heads to that anxiety zone I say to myself 'be good to yourself' and quickly try to find a displacement activity. Of course this doesn't always work and there are moments of meltdown, but it is getting easier. DS1 is making progress, he's almost 3. However, his younger brother is now 18 months and is catching up so fast it's mind boggling. DS2 even said he'd done a poo today, something which DS1 has never done. The speed at which DS2 is developing keeps reminding us of quite how behind DS 1 is.

Phew, that was a bit of a long one and think it's time for a displacement activity as I can see myself heading to anxiety zone - am off to cut the grass!

"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 agree that these stories are of limited relevance Schobe. If a child is going to find it easy to form relationships (which most of us recognise as key to their future happiness) that child has to be practising social skills, and if you have language/perception problems at 2/3 these are likely to interefere with that practice.
Even if your language is then suddenly born full-formed at 4, you're likely to have problems with your social skills. A few children with these social skills problems then retreat into areas where they can use their pattern-recognition skills to excel such as classical music, computer science and theoretical physics. Most don't have that option.

Thomas Sowell falls right into this trap in his "Einstein Syndrome: Bright Children who talk late" book. I have no problem with him pointing out that some kids talk at 4 and go on to be engineers. Some of us have met these kids or married them! But I think that children who don't talk till 3 or 4 will, on average, have a much higher likelihood of struggling with social interactions and facing social interaction later in life. So we as parents need to accelerate their acquisition of these skills where we can.

"I think this thread is turning a bit anti-medical professional, so I might be better buggering orf tbh"

don't bugger off! It's people like you who are needed - people who are willing to say "yes I do think that is a problem" but who are also still able to note and celebrate the positive about children (as you have already done on this thread).

The problem is that we're using a medical model for children who mostly aren't ill. It's a crude model, and it can be a damaging one and it's ok to scrutinise it.

See Stanley Greenspan for a doctor who understood this and tried to explain it.

I'm not anti-medical at all. I have respect for the medical and nursing professions. I really do think that some medics jump on the fact that a young child is speech delayed and automatically try and diagnose them as somewhere on the autistic spectrum.
If my child is indeed autistic (which I accept she may be), she is the easiest, happiest child and is a pleasure to look after. She is always smiling, rarely has tantrums, is not affected by changes in routine, has no rituals that need to be followed to keep her calm.
All she has is speech delay. Why can't this be addressed? I am tired of endless assessments from SALT's.
The just want my daughter to have some speech therapy!

I accept her social skills are poor for her age (3) but surely this is linked to the fact she has limited verbal language? I'm not interested in labels. I'm interested in practical help for my child. It is so fustrating, reading, talking to her, trying to bring her on when I feel the professionals are doing nothing apart from stating the obvious, noting her failings and quirks but offering no advice or therapy.
I'm feeling particularly pissed off today. Sorry...

I've thought about it and think I'm being a bit touchy about ASD or SN in general being seen as so shockingly awful that people would do anything to avoid their child being tarred with that brush.

But I was not much different 18 months ago and it's a natural feeling. Lingle, you are great at being more understanding and remembering how it feels at the start of the process.

By the way, I'm NOT saying that all the children on this thread will eventually get the SN 'label'. I just don't want any of the children who do to miss precious time for early intervention as parents wait hoping they'll catch up in their own time (as I did for a short time).

Sigh.

I'm crap at this!

x-posts arrogantcat, me too.

My DS started his 'assessment' sessions yesterday and Monday. The two children with him are light years ahead and it's depressing. He's missing out on his fantastic pre-school while they expect him to go to EIGHT of these sessions.

I've decided he can go to two more where the psychologist and OT can observe him, then that's it.

I'm very far from going along with the system we seem to have here, but it is the only one we've got so I guess I have to participate on some level.

It's so depressing and fustrating that since I drew my HV's concerns to my then 2 yr old's lack o speech way back in November 2010 all she has had is assessments. The hearing test we went along with although we knew there was no issue with her hearing, the SALT assessments we were very happy to go along with, the Paed assessment (which BTW part 2 of isn't scheduled till November) we also complied with.
We still have no answers and more importantly our daughter has had no actual speech therapy. She turned 3 last month and has one year till she starts Reception as no doubt the youngest child and the most behind.
I am worried sick for her.

Ironically, SALT seems to be the thing you can't get here for love nor money.

Do you have funds to hire a private one? (Forgive me if you've said upthread my brain is a sieve.)

Just to clarify, I accept the assessments have been carried out to determine if there is a reason for her speech delay beyond a simple case of being a "late bloomer."
Surely though, whatever the case, ADS or whatever, she needs speech therapy as soon as possible. At the very best it's going to be almost a year after voicing our concerns that she is finally going to get any.

I would explore private therapy in a shot if we had any available funds. We simply can't afford it.

this is the weakness of the medical model.

Everyone talks about kids "with ASD" as if they were different from kids "with language delay".

but both have just got stuck and need practice at their current level of social interaction - whether that's all the way back to basic imitation skills or having an extended negotiation with a peer. it's the same journey.

Meanwhile, thousands upon thousands of parents are being distracted by the whole ASD versus language delay non-issue, because ASD is made out to be one distinct "thing" that you have or haven't "got" like measles and that has to be lifelong.

all anyone wants is to identify the stage their child is at (which may be more behind than initially appears hence the role for SALTS) then practice with them appropriately at that stage (using techniques that may not be obvious) then move to the next stage, and so on.

the assessments are supposed to identify the starting point/stage where the child is but become a whole end in themselves.

grr, must go off and do some work.

lingle you are spot on. Whatever the cause of the language delay / disorder this symptom is treated the same using SALT techniques. We went to a group SALT session for a while and no two kids were the same in their difficulties though they were all similar in their problems. We had dyspraxia, possible ASD, APDs other sensory difficulties, glue ear - all sorts. The exercises weren't all about talking, many were to do with pretend play, taking turns, and listening.

Can I just say that I've read a lot of this thread, and even though I don't (currently) have a LO with a speech delay - but I have personal reasons for being on alert - I think you all sound like really wonderful mothers and the way you talk about your understanding, your children, and the communication issues is quite inspiring. Your kids are lucky to have you fighting their corner.

absolutely.

But Thomas Sowell cites children's parents being taken aside by teachers of the classes for "autistic children" that they'd been placed in and told to "get him out of here, he doesn't belong here". At a certain point this is just about fear and disgust and there is no need for those feelings now we know so much more about how to help children communicate.

grrrrrrrrr again.
really must do work.

Am going to look up and order the books you've suggested lingle.

I am feeling very fustrated, desparate and helpless.
I hate sending DC off to nursery as the one who can't speak properly and plays all by herself. She's happy in her own little world at 3 but what happens when she's older?

Arrogantcat, it's not much help but I can at least say I know exactly how you are feeling, and it's shit. However, our children WILL make progress and we have to keep faith that they will.

I do agree with so much of what lingle says about misuse of the expression 'ASD'. If we could be confident in the semantics - that everyone saw it more as a description than a diagnosis then there might be so much less fear and misapprehension surrounding it.

However, it's hard to tread the path of urging caution in this respect without sounding like you're trying to set yourself apart from the SN community and/or totally in denial about your child's issues.

A concept that has been brought in to help children has done just that but, as is so often the case, has also brought problems when it is found that one size doesn't fit all.

BUT, I am happy to use it in order to get what I can for my DS. It's just hard to know if you're achieving that successfully.

schobe, it helps a lot just to not feel so alone. DH adamant there is nothing at all to worry about and refuses to talk at any length about our DD's speech problems which makes me feel isolated and on my own in all this.
Thank you for your last post.

Ahhh the partners who say 'he/she will be fine'.

Yes, I had one of those. In our situ, I worked from home so it was easier for me to take DS to appointments etc. I can see now that this was ideal as I was just slightly more open minded than DH and there was less upset and affront with the professionals afterwards.

He just took a bit longer but has been fantastic throughout in a different way. It helps that whereas I am too pessimistic, he provides the optimism.

Arrogantcat, can you take your DD to appointments on your own to give your DH a bit longer to get his head around stuff?

Also, have you got the Hanen book 'It takes two to talk' ? I know it's been recommended earlier in the thread but it really is worth getting. It also doesn't refer to ASD specifically in the same way that 'More than Words' does.

In a nutshell, my DS' life suddenly had to become a whole lot more uncomfortable. Toys were all put out of reach, favourite foods had to be asked for (and were cut into small pieces so he had to repeat the request) etc. etc.

In our case, DS requests via PECs as words or even gestures were not forthcoming easily (occasionally but rarely).

Tbh, beforehand he had no reason to communicate with me. He was a difficult, screamy baby so I had learned how to jump to his tune very well indeed. I knew what he wanted and when, and provided it before he had to do a thing. Changing was tough as it went against all my instincts as a mother.

God that sounds awful - his life was not made uncomfortable in every respect. It also got more fun as all of us started engaging him more in lots of fun peekaboo, tickling, chasing-type games. Honest.

I also have a DH who is very much less worried/pessimistic (at least outwardly) and this has caused quite a few rows. I knew something was wrong a year ago already and he refused to believe it, we had a blazing row and lots of upset. He really did not want to believe there was any problem to be dealt with. He told me, for example, that neither of his older children spoke at all until after they were two, and that in the country he comes from that is the norm and this is just "British pushiness" trying to make out his son is "backwards" when he is not (he even told that to the paediatrician we went to see), and I think he really believed it. In fact it was not true, as he had to later admit that his older daughter was talking when the younger was born 19 months later. But I think he just did not want to believe in any problems. It is very difficult. I have to do all the pushing for any help, assesments etc. If it was left to him nothing would be done.

He is great in being supportive in every other way but just does not want to hear my pessimism and fear a lot of the time, refuses to talk about the possible problems etc. It can be very difficult.

It's tough on us mothers but an optimistic dad who spontaneously and joyfully engages with the child for fun is what the child needs.

If that's at the expense of us having someone to talk to about our fears and worries, I feel it's a price worth paying. (again, see Greenspan, who alone among doctors realised that a grandma who who can bring out a child's fun side is a precious asset and her views on ASD are not important to the child)

But a dad who tries to stop the mum engaging with professionals altogether isn't acceptable. And obviously sometimes it does turn out that the problems are going to last a long time and then the dad does have to turn around and face it. We never got to that point.

I agree lingle. Much as I sometimes feel I am struggling with DD's issues in my own, DH does calm me down, make me look on the positive side.

I am learning to accept that it will have to be down to me to make the appointments (am taking DD for yet another hearing test next week which DH refuses to come along for anyway as he sees it as pointless) and it is down to him to keep me sane, cheer me up and do what he does best, which is infact joyfully engaging with her with the scrutiny, the analysis and worry which is always at the back of my mind.