Worried about my son.....

[vlove1]

Hi there.

I have 2 sons.
Eldest born 3 months early. Diagnosed asd at 3 years. Under genetics for potentially having an undiagnosed syndrome. Very healthy physically. He goes to a special needs school. He will never live independently. I am his carer. He gets respite care . 8 hours a week

We have a 15 month old too.
Just before lock down (3 months ago)
Our baby was albeit it slowly hitting milestones. He was eating foods with his hands . He had just said Mama. But he has always been extremely emotional. Cried alot . Always wanted to breastfeed constantly. Always hated baby toddler group

Roll on to now.

He is 15 months.
He drags his head about its like it is too heavy for him
Cries all the time.
He breastfeeds and this is the only time he gives happy smiles and meaningful eye contact.
He isn't pointing or clapping
He is not passing toys.
He is not saying any words
He likes to spin wheels.
He likes to push cushions off our sofa.
He doesn't recognise his name.
He stares blankly if strangers talk to him. Literally like they don't exist.

Currently waiting for Health visitor assessment and audiology hearing test at hospital. But both are delayed as is the current situation with covid.

We live in a small village I got so worried about his dragging head, how emotional he is and how delayed be is, that I contacted our GP.

She measured his head 51st centile weight 47th centile. And checked in his ears for wax or blockages. None.

She then wrote to the health visitor and to the audiologist again to put pressure on for a follow up

I'm just so worried I'm going to have another extremely disabled
(Socially / developmentally ) child.

I'm so tired

Anyone else have a similar experience?

Just to add.
My eldest is now six and has spent the last 3 months mostly at home bar 2 hours a week at school.

Hi,
I have a 14 month old son and and he isn't pointing or sharing his toys. He is also very shy with strangers and doesn't respond even when they say hello and being friendly with him.
I've looked this up so many times on google and similar forums and have decided not to, as I have had so many sleepless nights and the little one does pick up on my stress and worries.

Babies and toddlers love spinning objects and there are many toys that have these features, apparently this exploration will help him to draw and write in the future.

My son also pulls cushions and opens and closes every single thing he finds in the house (draws, doors, windows) he is just exploring.

I will call my sons name say 100 times and only 30 times throughout the day he will look. He is probably choosing to ignore you. If my mum called my name so many times a day and despite being NT and a adult, I will ignore her or will put on my headphones or just leave as it will annoy the hell out of me. That's why I no longer call my sons name out so many times and only when I really have to. By doing this, I think it has improved and now he looks first time round.

My son also doesn't say any clear words and I still breastfeed him where he displays repetitive behaviour for instance, he will pop his head under my T-shirt takes a few sips, goes off and comes back for a few more sips. This would go on all day if I let him. But apparently, I used to do it to my mum when I was little too and I am nt.

Don't worry, he will be fine. Plus every child develops differently. I'm no longer worried about my son and now have given him time until our next appointment and each day will ignore these milestones so I could spend quality time with him so he develops at his own pace. Just enjoy him, he will be fine.

Thanks so much. That's a good way to look at thinks I was a really late developer too xx

Hi there,

I know the concern and worry you have, I have 3 SEN children all 3 are very different to each other. It is hard coming to terms with one child having SEN let alone the worry your 2nd son may also have issues. You are also going to be hyper aware of his development and watch every move, because that happens when you have been through it once, you are worried it is going to happen again.

My 2 were very different at the stage you are talking about, one had no speech but noises, but no real social interest in others and had little understanding or able to follow instruction. One of the key concerns is speech and lack of any kind of babbling/noise making or social sharing by this age. You would be expecting to see a level of social interaction and being able to follow simple instruction.

As difficult and frustrating as I know it feels, keep talking to him, sharing and engaging with him. Continue to point at things and name them, keep it simple and repeat it several times. One of the things I tell every parent is to keep notes, as to what he is doing with regard to sounds/noises/how he plays/engages/listens/what he likes doing/what he does a lot of etc. Over the months, this starts to give a really useful picture if you are referred further and also for you to see what development or changes he has made.

The concerns you have listed are covering speech, social and imagination/play, which do sit within the triad for autism. You mention your other son is being tested for a possible syndrome, are their behaviour patterns similar at all?

The hard part is the waiting to see if anything changes or improves, and the impact this has your own mental health. Share your concerns and feelings with someone you trust and can talk to, you need an outlet to tell someone how you feel. I want to tell you that you will be ok, but this is a grieving process and you are already experiencing that with your first child.

Just because your son is not hitting milestones now, it does not mean that he will not make them. He maybe delayed and these may come later, for whatever reason, but he is still very young.

Take care of yourself

@PaolaNeri

Hi there,

I know the concern and worry you have, I have 3 SEN children all 3 are very different to each other. It is hard coming to terms with one child having SEN let alone the worry your 2nd son may also have issues. You are also going to be hyper aware of his development and watch every move, because that happens when you have been through it once, you are worried it is going to happen again.

My 2 were very different at the stage you are talking about, one had no speech but noises, but no real social interest in others and had little understanding or able to follow instruction. One of the key concerns is speech and lack of any kind of babbling/noise making or social sharing by this age. You would be expecting to see a level of social interaction and being able to follow simple instruction.

As difficult and frustrating as I know it feels, keep talking to him, sharing and engaging with him. Continue to point at things and name them, keep it simple and repeat it several times. One of the things I tell every parent is to keep notes, as to what he is doing with regard to sounds/noises/how he plays/engages/listens/what he likes doing/what he does a lot of etc. Over the months, this starts to give a really useful picture if you are referred further and also for you to see what development or changes he has made.

The concerns you have listed are covering speech, social and imagination/play, which do sit within the triad for autism. You mention your other son is being tested for a possible syndrome, are their behaviour patterns similar at all?

The hard part is the waiting to see if anything changes or improves, and the impact this has your own mental health. Share your concerns and feelings with someone you trust and can talk to, you need an outlet to tell someone how you feel. I want to tell you that you will be ok, but this is a grieving process and you are already experiencing that with your first child.

Just because your son is not hitting milestones now, it does not mean that he will not make them. He maybe delayed and these may come later, for whatever reason, but he is still very young.

Take care of yourself

Thanks so much!

Our health visitor has now done a more in depth assessment and is passing us over to the child development centre.

Tbh he's so similar to my older son that i wouldn't be surprised if it is something genetic.

Im starting to make my peace with it all and am accepting my son more for who he is as opposed to worrying about what he isn't xxx

That's good they are taking action and not asking you to wait, which just adds to the worry of not knowing!

My eldest is unable to live independently, but he has come a long way from what I thought he would be like when he was very little. There is always scope for improvement. I often tell parents with newly diagnosed children that the place they are now in will not be the place they are in for the future.

Take care and don't forget to ask for help when you need it and to take time for yourself. xx