15 month son VERY behind... should I be worried?

[Myrtleminx24]

Hi all.
First time posting on here. So sorry if I seem silly or overly worried, but this has been on my mind for a while now and its causing me to become very ill...
I have a beautiful little boy, coming up to 15 months old, and is my first child. It has been a struggle during lockdown, no family or friend support at all. Just me, my husband and DS. HV's haven't really been in touch and all his reviews were over the phone. I don't know if what im doing is right if I'm doing it at the right time, etc.

Anyway, I have always been extremely anxious about DS possibly having autism. Severe, low functioning autism runs in my family, my brother being in a care home and is completely non verbal and needs 24/7 care. Living with autism throughout my childhood has been hard. I was a child carer for him, and was on the other end of violence from him (punches and faeces thrown at me) and to see my parents break and crumble over the years, all while my brother didnt and doesn't seem to know or care that anyone outside his little world exists... it was and still is very difficult... so I hope you can understand why I may have this selfish desire to not have that for my family... to enjoy my family life "severe autism free"... I know that sounds awful but its how I feel.

My concerns for DS started early on when he was not reaching his milestones at 12 months old... he wasn't babbling, gesturing, clapping, wasnt sharing interest in things, wasn't responding to his name... he only just started pulling himself to stand. He also was showing "stimming" behaviours, like spinning bottle lids on the floor constantly, shaking his head, putting fingers close to his face. At his year review (over the phone), he scored incredibly low on social and communication.
I was trying to stay optimistic but vigilant, thinking "hes still only young, he will get there".

However, at 15 months, hes made little to no progress...hes had a hearing test, all fine. Still no words, only saying "bababa" rarely. Doesn't point, clap, bring me things, wave, doesn't walk... but has started flapping his arms and hands when excited (a huge autistic trait my brother still shows) he also still spins things, looks at things out the corner of his eye, shakes his head alot. He seems so so behind others babies his age I've seen at playgroups etc.

No one is taking my concerns seriously. I am so so SO terrified he has autism, and everyday he is showing more and more signs. The HV said that "all babies progress at their own pace" and that there is no help or assessment for children with the NHS until they are 2!

I want to get help for him early, as early intervention is key, but no one will listen.
I just want to know whether I'm being too paranoid about things. Whether the lack of progress and milestones is normal. Is it my fault, have I caused my DS to be developmentally delayed? Has anyone had this before and their child has grown up neurotypical?

I know I should be thankful for having a healthy and happy boy, and I feel so guilty for thinking these things, but my whole maternity has been hell due to this constant worry... and my fears are slowly coming true. Just would like some advice and after some reassurance, if possible...
Many thanks all

Hi, I'm afraid I can't be much help but just wanted to say you're not alone. I've got very similar concerns about both of my twins, who are almost 15 months old. Nobody seems to be taking me seriously either and it's very isolating. It's making me unwell too and I plan to contact the GP this week as I am struggling to cope with how worried and anxious I feel.

I totally get what you're saying about the guilt too, my little girls are absolutely delightful but it breaks my heart that they never look at me or show affection. I can't look at them without feeling full of anxiety about what their future holds. I just so badly want to enjoy this time with them, but I can't.

I am struggling not to blame myself for this, but that's because there's no family history of this kind of thing. However in your case, if your DS is not neurotypical (which he very much could still be), you know there is a family history and nothing you did could have changed that. Perhaps there is some comfort in knowing that?

I have just bought a book called An Early Start For Your Child With Autism, so at least I have something to go on while the NHS leaves us in limbo. Even if my twins are not autistic, I am hopeful that it can help me to at least support them with their developmental delays. I'm having a think about which other services (private) might be useful, probably SALT but I may wait until they're 18 months before pursuing that.

Feel free to DM me if you want to talk, I know how difficult this "not knowing" phase is x

Ilets just say he does have Autism, you can't change it. So whether you know right now or not won't make a difference.
Personally what you're saying I don't think is that bad. There's lots of babies who don't walk and then suddenly at 2 they do.
My son is 20months now and only recently has he started to say mum, juice, rara for his toy. He really doesn't say many things except animal noises.

O think you're being too paranoid and I can understand why but if you're looking too much for signs, you will see things then start fitting them into your narrative.
Try not thinking about it for a few weeks

I just want to know whether I'm being too paranoid about things.
Yes.
Whether the lack of progress and milestones is normal.
Yes
Is it my fault, have I caused my DS to be developmentally delayed?
No!

They can’t diagnose before two because development before then isn’t linear.

And you’re understandably stressed and cautious, but that’s leading you to take things out of proportion. For example; flapping your arms can be an autistic trait - but there’s no autism in my family, and me and my sisters do it when we’re excited. It’s just one of those things.

He might need further help, or he might just be developing slowly. Remember that because of lockdown, he’s been a lot more isolated from other people and babies than he would have been. That does have an impact on communication and socialisation.

My son was diagnosed just before 2. For us it was obvious from a young age. His patterns of behaviours were distinctive, it wasn't so much about his lack of words, plenty little ones don't talk a lot, it was his lack of comprehension, couldn't follow any instructions, didn't point or respond to name, had repetitive behaviours constantly collecting items and arranging them, he didn't play with things as they were intended he had his own way, no copying or mirroring, I could go on. But... Other people would constantly say because he smiled a lot, was cuddly - he couldn't be Autistic.

We are accessing services now to support him. Many of these can be supportive without a diagnosis. Ask your HV about portage workers, speech and language, occupational therapy. Whether you have the diagnosis or not at this stage that's what's on offer.

Best of luck, I know it's a worrying time but whatever the outcome, you will do great.

@Myrtleminx24

I am so sorry you had a childhood blighted by autism. There is no way you should have ever been a child carer for your brother. He was your parents' responsibility, not yours.

As far as your DS is concerned, it is too early to say, and it is true that all babies develop at their own pace. But even if he is autistic, it does not mean he will be like your brother. As someone once said,"If you've met one person with autism, you've met one person with autism."

When our son with autism was 3, he had virtually no language, no social skills, the concentration span of a gnat, exhibited bizarre behaviour and regularly had meltdowns. He was not diagnosed with autism until he was 8, although he did have a lot of SLT from the age of about 2.5 and he had a Statement of Special Educational Needs ( since changed to EHC Plans) from the age of 4 which provided for 12 hours 1:1 support at school.

I have told his story elsewhere on Mumsnet, but the short version is -although he has struggled and things have not always been easy, our son has triumphed over autism to such a degree it no longer defines him.

Because of all the support, the therapies, and the education and training he has had, he has grown up into a happy and confident young man, with a quirky sense of humour and an inherent ability to endear himself to everyone who comes to know him.

Speak to your GP and ask for a referral to a paediatrician and clinical genetics service. With the context of your family history I do not think you should be made to wait until he is older for investigations. I sorry you are in this situation.

Hi, Just checking in to see how your son is doing now? x

PP above was kind of right to say that you can’t change Autism, but you are also correct to say that earliest intervention is best. Neuroplasticity is at it’s strongest during baby and toddler years. I would harangue GP.

@Myrtleminx24 G How is your son doing now?

Hi all.
Sorry its been a few months. Thank you fir all your replies.
Just updating.
My husband left me and DS out of the blue when DS was nearly 16 mo. He said he didn't like family life and he wanted to go fishing more, and live a "stress free life". So he left the day he told me and hasn't seen DS since... strange, and distressing, considering he showed no signs and was talking to me about more children just a week before... our 8 year long relationship has abruptly ended in confusion. It doesn't matter anymore, I'm just concentrating on my son who is the most important person in my life.
In regards to DS... he is 20 months now and no improvement. I am putting all my being and energy into loving and raising him. But, even the professionals are now saying, it's clear a learning disability is there and it's leaning towards "severe/ low-functioning".
He eats very poorley, he sleeps very poorley... he doesn't talk, he doesn't interact, he doesn't care...
I'm doing all I can as a mother who loves him dearly... I'm scraping by to send him to nursery a couple of afternoons a week, just so he can have more opportunities to thrive... the nursery staff have made further referrals to SALT and Portage due to his extreme delays..
The other day, he flicked his eyes up to my face for a second as I was reading him a book and using puppets (while he is doing his own thing in his own world)... and my heart savours that split second of acknowledgement that I am an entity that exists...
Then my heart immediately sinks thinking about it. Am I doomed to live my motherhood years chasing those seconds of recognition and eye contact from my own child?
So, I've come to the conclusion that I must put all selfish wants aside. I no longer expect anymore happiness in my life. I am to be a carer for a disabled person, just like I have always been since I was a child..
I'm currently mourning the child I could have had.. I will miss the moments that all parents take for granted: their child's voice talking in sentences, taking their child to their hobbies, talking about school, watching them learn to read and write, making friends, showing affection and sharing interests, growing independent...
Instead, I need to embrace what I have and will always have: a child and adult that needs constant care, does not talk, cannot wash or wipe themselves, probably violent, shows no affection...

My parents have also abandoned me and DS since finding out. My mum said its too traumatic for her, as she has lived with it with my brother all her life and its destroyed her... she can't face it with her grandson too.
I won't give up on DS. I'm all he has, even if he doesn't see me as his mum but just some "annoying entity" that is intruding on his world and keeping him alive... I am a means to an end, just like with my brother and all the other people I've worked with with severe LD and autism...
It's killing me, but I won't give up. My happiness is now forfeit, I will keep at it and try my hardest with DS until I drop dead. My brother once beat me up so hard that I had concussion and was hospitalised, all because I made a sound when the washing machine was on (he liked staring at washing machines for hours).... maybe my own son might do the same one day if he is as severe, and put me out of this hell.
I just wanted a child that bonded with me back, and could talk to me. I don't want an Einstein, I don't want a "gifted" child. Heck
I'd even love to have a child even if they had a mild/moderate disability as they would at least look at me and eventually talk ... I just wanted a mother/son relationship and watch my child thrive and grow independent. I need to realise now that I am not destined to have that...
Thank you all for your words, but I have seen the cruel and terrible side to low functioning autism and LD... what it does to families and to the person themselves. Its easy to say "accept and embrace" when you haven't experienced the pain yourself.
As I said, I will always be the best mum I can for him. I will keep trying. I will soldier through the long referral wait times and the support difficulties. Im Thinking of DS at the end of the day and I need to not be selfish.
I hope all of you guys enjoy parenthood and enjoy watching your children thrive and grow. Savour all those moments.

I am so very, very sorry to hear this. My heart goes out to you.

Myrtleminx I’ve just come across your post. i am so so sorry that you’ve been abandoned by your husband and your parents as well in the middle of such a worrying time. How incredibly selfish of them.

I have no direct experience in this area (my DD has other SN) all I can do is encourage you to seek respite whereever you can. Your DS may be less affected than you currently believe, or if he is as severe as you fear, he may be eligible for regular respite or even residential placements. I know it’s far from easy to get this kind of help but some do manage it.

Perhaps finding others living the same experience (through facebook groups or autism charities for example) may help you so you don’t feel so alone.

I can tell from your post you are in a dark dark hole right now and I really hope that you can find some glimmers of sunshine . Do you have friends who you can speak to in RL?

(((HUG)))

Your sadness & heartbreak is palpable. I wish I could hug you properly.

I'm sorry your DH abandoned you both.

I'm sorry your parents feel unable to be there for you too! It must feel like another kick in teeth for you, I really am so sorry.

I agree with the poster that said to try to find other parents who have children with very low functioning autism as well, the support will really help.

I can understand you feeling the way you do, but maybe your GP can help you a little.

I know it feels like 'this is it' right now, but you just never know and life might be quite different than what you're picturing right now. I hope so.

Lots of love & strength
X

I'm so sorry you and your son are in this situation - how selfish of your husband and parents to run away when you both needed them.

Fight for all the support you can get for yourself and your son - NHS, autism charities, nursery, community projects... Life may not be what you would have chosen, but it can still be meaningful and, yes, even happy for both of you in time.

Your son is not your brother. History is not doomed to repeat itself. What happened to you as a child was wrong and you should never have had to endure that. Your parents should have protected you. But your son isn't going to have parents who leave a vulnerable child to look after him - he has you - an autism-aware, loving mother who is already devoted to him and fighting for him.

I've spent a number of years working with and caring for autistic children and people with intellectual disabilities, and while there have been some common themes, everyone I've worked with has been their own person with their own strengths, interests and ways of brightening up the world. Yes, there were some very hard times, but the bits I remember most clearly are the happy times - playing drums and guitar together (very badly in my case!), sitting watching Teletubbies and singing along in our own way, making the perfect line of model trains, the time one man bravely defended me from a greedy seagull... I suppose what I'm trying to say is, don't give up on happiness for you both. Some of the people I worked with were largely 'written off' by much of society, and many had severe/profound disabilities, but they and their families did still have good times in their lives.

I really hope you both get the support you need and that things improve for you. Sending virtual hugs for both of you.💜

It’s impossible to read a thread like this and not reply. Not sure if you are still reading OP but there ARE ways you can connect with him. Just for now put the book down. What is he doing? Get on the floor and do the same. Google intensive interaction, get the book, watch you tube it’s the absolute golden nugget for getting that connection between you… once you get that you can move on but please look at it.

I echo… he’s not your brother, none of us have a crystal ball as to where we will be with our kids in a year, 5 years, in a lifetime. Forget that, just look at today and what you can do now.

Let us know how you are going on x

Hello OG post - I just wanted to briefly share this with you. My son at 20 months was very similar to what you have described. Fast forward to age 5 and he is speaking although behind, he is learning to read and write amongst other things. When he was 3 at the beginning of lockdown I tried with very small steps to try and get his attention. I taught him how to copy and this was the number one thing for him. He loves smarties and through repetition he slowly learned colours and counting. If I can offer anything to you is that your little one is still very young and you have time. Early help is essential. I didn’t get any useful help from SLT/portage so I did it all myself. What also helped was 1:1 at nursery. Sending you luck and best wishes and 💐

@Myrtleminx24 I cant help but still thinking about you and your son. How are things now?
Big hugs to you!

I think about this thread often. How are you @Myrtleminx24?

@Myrtleminx24 how is your son doing?

Hi OP,

I know not every journey is the same, however my son was ‘presenting’ very similar traits to your child and did not walk until he was nearly 2.
He is now 5, able to make verbal requests and use simple language and can read at age appropriate level.
There are areas where he still majorly struggles (eg can’t ride a scooter and has just learned to jump) but I celebrate every small win.
Once again, im conscious that every child is different but I just want to stress that you cannot predict the future (especially when they are that young)

I can see you posted a few years ago now, I hope you and your son have found some support since then. You are not alone x