On a downer right now

[sherryberry79]

Hi ladies,

Many of you will remember Millie's story, born 26+3, 1lb 5oz, long term intubated, in NICU/SCBU for over 4 months, home on oxygen until 11 months.

Mille turned two on Aug 3rd, she was two yrs corrected on Nov 6th. Don't get me wrong, she has done amazingly well, and better than I ever dared hope she might when she was teetering on the edge of life in those early days, but I guess however well they do you always want that little bit more for them?!

We have confirmation that her hearing is good, yet she has no speech. And by no speech I don't mean that she doesn't make sentences etc, she literally has NO words, not even a mama or a dada. I think her understanding of language is slowly improving, she can point to her nose, tummy, the dog etc. She seems to understand when I say it's time for bed, or time for her bath as she runs to the stairgate but this is about the extent of it.

She does n ot display the typical signs of autism. She enjoys social interaction, makes eye contact, no obsession with stacking/putting toys in lines etc.

Today we had the first of six sessions that will take place fortnightly in our home, a speech and language therapist comes and plays with her. Repeating the same basic words, simultaneously doing the makaton signs. She was re-inforcing the necassity to keep language simple. As I hand her a ball I say 'ball' and nothing more. TBH it feels patronising when they give me this kind of advice now. Millie has been under the SALD for over a year now and this was the first piece of advice I was given. Even then, it seemed somewhat redundant as I already doing it....is it not common sense to keep it simple and repetative?!

During the visit I was looking for a little reassurance that speech will eventually come, and I asked her if there were some children who just never speak, despite having good hearing and no outward signs of disability, and she said yes those children do exist. Not really the reassurance I was hoping for, I should have known better than to ask a leading question like that.

Also, until recenly we were always told that Amelia would catch up with her development at some point. But in a meeting with the physio just before Xmas she said there comes a point when you have to accept that she is actually too far behind to catch up. And started to talk about the possibility of special schooling or at the very least then learning support in a mainstream primary. I guess I have always known this would be a strong possibility but to hear it 'put out there' still shocked and upset me.


The upshot of all this is that I really feel that things are taking a turn for the worse. Instead of the prognosis improving we seem to be going in the wrong direction. I am so proud of her, she is a happy little girl and I am thankful that she is in such good health considering the start she had in life. But right now I just feel down and frustrated, I can't handle the waiting for her speech, always thinking 'maybe today will be the day, and then another week or month goes by and she has not said her first word. I'm really tearful, and can't help but think about worse case scenarios for her future.

Her daddy should be back from work some time before the end of the month (he works on a ship) and I am really looking forward to having some support. Just feel really low right now

 

[makecaker]

Try not to worry too much my little boy has just turned 2 and he doesn't say anything or at least nothing understandable. So going by your adjusted age she is not far past 2. There are lots of mummies on here who's 2 year olds say very little. There is still hope for her yet.
You read lots of stories where parents are told their children will never walk or talk and they end up being totally 'normal'.
There is a lady on here somewhere actually who didn't walk until she was 6 and now she is fine so there is still time.
As for schooling I'm not sure how that works but I'm not convinced that 'special schools' are always for the best. Maybe you could investigate your local schools and chat to head teachers. We have a school near us that is a mainstream school but has a big focus on sen and takes lots of children with all different disabilities and problems

 

[Lottie86]

the fact she can point to things and understand things is a brilliant sign as it shows the cognitive understanding is there. It might not seem a huge deal but it really is.

Also, until recenly we were always told that Amelia would catch up with her development at some point. But in a meeting with the physio just before Xmas she said there comes a point when you have to accept that she is actually too far behind to catch up.

That is an awful thing for them to have said to you!! Especially seeing as she's only just turned 2 corrected. Have you got anyone like a consultant you can discuss it with? I have never heard of anyone being told this least of all in such a blunt manner

We're getting the really patronising stuff with Iona from the hospital OT at the minute (we're being told to put our face right next to hers and make stupid babyish noises at her, and they've actually written a sheet for her wall saying so, and best of all they've put on her sheet that we must pick her up, ummm since when do people need telling to do that?! ) and it really does make you want to slap them doesn't it!

I hope your OH gets home soon so he can give you a big cuddle but in the meantime

 

[sherryberry79]

Thanks for your replies hopefully she will suprise us all and blabber out a full sentance all of a sudden!! And Makecaker, I think you're right about special schools not always being the best option, but I suppose we'll have a better understanding of what she needs closer to school entry time (I am hoping to defer her school entry, being an August baby she was born into the 'wrong' year group).


Lottie86 you are an inspiration. You have so much to deal with right now, problems that put my worries into perspective in fact, and you still find the time and patience to reply to other people offering support. Findlay and Iona are lucky to have such a wonderful mummy

 

[AP]

Oh my god. I could have written your post hun. We are stuck too. We have heard whispers of one word. Daisy, and even then its not 100% clear thats what it is, theres only one time we could catergorically say thats what she said.

Alex sounds very much the same - she can understand us, and picks up things ok, but its never given back.

Speech Therapy arent exactly moving fast here either - the waiting lists are huge and i start to get a bee in my bonnet. They paired us up with another little girl and it was clear she was going to talk, she just wasnt quite there yet. She took an interest in everything - yet Alex screamed and cried all the way through. And Alex was nothing like this little girl. This little girl made noises, babbling, and interacted. I couldnt help but think WTF are they trying to do to me here, I was crushed.

Our next appointment has just arrived for the 20th. :/

 

[sherryberry79]

Nice to know I am not on my own Sandy!
People keep saying "you'll be wishing to go back to these days when she does start talking and you can't shut her up" I just smile sweetly and agree with them. Inwardly I am thinking it's not 'when' it's 'if' she speaks, if I knew for sure that it's just a matter of time I would not be tearing my hair out like this. And I want to tell them categorically that should speech come I will never get tired of hearing her chunner away with herself. Taking these things for granted is not a luxury we all have!

Sounds like Alex and Millie are in very similar boats at tho moment - I'm crossing my fingers for both of them hun

 

[AP]

Omg I actually HATE when people say that. Sadly i've even heard it from fellow prem mums and I find that very hard to swallow and forget

 

[Lottie86]

Ooo I'm with you there, I could smack the next person that says to me 'oh once he starts talking/walking you'll wish he'd be quiet/stay still!' Ummmm no I won't!

 

[Marleysgirl]

Sherry

I know it's really hard for you whilst hubby-to-be is away. You know I'm only up the road if you need me But I also understand that you may not want to meet up with me & Andrew too often, because although we are experiencing a similar speech delay, you know that we have a diagnosis of his hearing loss as possible reason.

We are due to start S&LT for Andrew shortly, just awaiting the first appointment. TBH I'm not expecting to be told anything mindblowing but who knows. We haven't moved beyond squeals and vocalisations, no consonants or 'babble'.

We are meeting with his Pre-Schools Advisor this week to discuss nursery provision, I know that he will be mainstream with support so I would expect Millie to be in a similar situation. She has told us before that his development may speed up once he starts nursery and is surrounded by a peer group demonstrating things on a daily basis, and I'm inclined to agree. So I think we have decided that he can go into nursery, and maybe even reception year, at normal time - but that we reserve the right to then request a delay to his schooling if he's not ready, effectively repeating either nursery or reception for a second year (depending on when we decide).

 

[sherryberry79]

Thanks Laura,
I'm just having a bad couple of weeks, and probably the time of year doesn't help either. I think that because I am feeling down I am dwelling on the negatives. My best friend came round this afternoon, she asked me how I was as she sat down and I just started balling! But I actually feel a little better for it! I bet I freaked my Bessie out though, she was only asking out of politeness! We should meet up again with the rascals soon, take them to soft play, let me know when is good for you guys xxx

 

[Marleysgirl]

I think we all go through down periods. I know I've vented elsewhere when necessary You just have to try and stay strong

Will talk to you over on FB about the next softplay meet. But I'll let you finish your wine tonight (hic!)

 

[sherryberry79]

(hic) fanks ( hic).........

 

[Foogirl]

Nice to know I am not on my own Sandy!
People keep saying "you'll be wishing to go back to these days when she does start talking and you can't shut her up" I just smile sweetly and agree with them. Inwardly I am thinking it's not 'when' it's 'if' she speaks, if I knew for sure that it's just a matter of time I would not be tearing my hair out like this. And I want to tell them categorically that should speech come I will never get tired of hearing her chunner away with herself. Taking these things for granted is not a luxury we all have!

Sounds like Alex and Millie are in very similar boats at tho moment - I'm crossing my fingers for both of them hun

Oh no, no, no. People are so unbelievably cruel. They think it is reassuring or placating, but my god, walk in someone else's shoes FFS before saying something so bloody stupid. Our problems are with movement and people insist we are "lucky" to have a static child. If only they knew how we long to have our toddler trash the room.

If you don't mind, I am going to cut and paste your post on an email to my brother's girlfriend. She is a paediatric speech therapist and might be able to give some more encouraging words, if there are some to give.

It is so hard when there is just that one thing you want them to do. We do try to tell ourselves after Abby's entrance into the world, any progress is a miracle, but some days it does really get us down. I hope you see some improvement.

One tip that might be useful is to video lots. Now, we had no problems with speech so this might not be the case, but when we were taking video of Abby doing something, we were so focused on the task in hand, it was only when we played it back, we heard other sounds which were actually the beginnings of words. Might not help but might be worth a try.

 

[Marleysgirl]

One tip that might be useful is to video lots. Now, we had no problems with speech so this might not be the case, but when we were taking video of Abby doing something, we were so focused on the task in hand, it was only when we played it back, we heard other sounds which were actually the beginnings of words. Might not help but might be worth a try.

I have to agree that taking lots of video is good. When you watch it again a couple of months later, it's much easier to see progress, to see how far your child has actually come in that time. (This is why visitors' first comment is nearly always "Hasn't s/he grown!" and you're left thinking "Has s/he? I hadn't noticed" )

I'd like to find (not sure how) mums of small/extreme prems who are now 5 or 6 years old. When talking about preemie development, such discussions tend to be among either recent mums like ourselves, or mums to teenagers/adults who were prems who say "You can't tell now that they're grown up". But mums with kids at primary school, did their children have delayed start to speech? I think I'm off to post on NetMums to ask this ...

NetMums thread (in case any of you are members): https://www.netmums.com/coffeehouse/children-parenting-190/primary-school-age-4-11-years-60/700450-advice-wanted-mums-primary-age-ex-preemies-about-speech.html

 

[Charliej101]

I don't have experience with my own daughter yet but I was working at a nursery with 2-3s before she was born and there were a few 2 yr olds who did not speak. One I worked with closely didn't seem to understand much beyond his name at aged 2 (he was prem but I cant remember how much and had no known hearing loss or additional needs). By 2 and a half he had began to speak some words mainly 'no' and the names of trains from Thomas the Tank Engine. He's 3 now and still behind in his speech for his age but it is coming on slowly. There were also a couple of other children who didn't develop speech until around 2 and a half.

I understand how you feel about inappropriate comments. My daughters deaf and Im always hearing people say well at least she can't hear x,y,z or at least you don't have to worry about waking her up with noise. There exactly what I want.

 

[Foogirl]

I understand how you feel about inappropriate comments. My daughters deaf and Im always hearing people say well at least she can't hear x,y,z or at least you don't have to worry about waking her up with noise. There exactly what I want.

Oh my god! People actually say that?????

I hope you give them a withering look and tell them that's exactly what you want. I think I would respond with a very sarcastic. "yeah, that makes the whole thing so much better"

I really do hate people sometimes!

 

[Charliej101]

Yeah I know they don't mean it in a horrible way just dont think they think about it properly but its still annoying. We went to a NYE party and someone was asking about her hearing then said probs a good thing she cant hear anything tonight

 

[Marleysgirl]

I always feel like *I* am allowed to make jokes about Andrew's hearing loss (like the fact that fireworks don't disturb him) but nobody else can Fortunately I'm surrounded by relatively sensible people and have heard very few crass comments like this.

 

[AP]

I think that goes for everything though, I think we are the only ones that can allow ourselves to say silly things because we have to make light of a situation. Yesterday I "discussed" with Alex that being premature doesn't mean everything else comes early , this includes ripping her iPhone out the charger when it's only just ready to switch on....

 

[Marleysgirl]

Also, until recenly we were always told that Amelia would catch up with her development at some point. But in a meeting with the physio just before Xmas she said there comes a point when you have to accept that she is actually too far behind to catch up. And started to talk about the possibility of special schooling or at the very least then learning support in a mainstream primary. I guess I have always known this would be a strong possibility but to hear it 'put out there' still shocked and upset me.

We are meeting with his Pre-Schools Advisor this week to discuss nursery provision, I know that he will be mainstream with support ... She has told us before that his development may speed up once he starts nursery and is surrounded by a peer group demonstrating things on a daily basis, and I'm inclined to agree.

Just an update after today's visit. Andrew is deemed not suitable for mainstream pre-school with support, it's been decided that his "complex needs" would be too much for SENCO style support in a pre-school setting.

So he is now on the list for either a SEN nursery or a private playgroup with specialist support (15hrs govt funding plus sponsorship to pay for specialist support).

TBH We're happier with that decision than with the thought of him in mainstream and worrying whether he's getting the 1-to-1 support that he needs.