My 4 year old is still a baby

[autismmumx]

I’m writing this because I just really need some advice because we are getting nowhere with professionals. I know you are not doctors but it would be great if anyone can sign post me or has experience similar who can share some advice with me.

My son is autistic and on the very high end of the spectrum. He is completely non verbal and we communicate at the moment by him leading us. We do understand him but sometimes it’s really hard, for example going through foods until he takes what he wants. It is so upsetting for him because I cannot imagine how hard it must be to not be able to even communicate what he wants to eat. He frustrated so quickly too.

I try my best to reassure that mummy does understand even without words but I really don’t know if he understands.

We have been told that he is severely delayed and he is going to be going to a SEN school and has his ECHP.

My son is amazing. Just amazing. To not be able to communicate, yet finding ways to do so, he is so clever. He is so funny and such a happy little boy. Everyone who meets him adores him and we’re lucky to have a 1:1 at nursery where he goes 3 mornings a week (he can’t cope with any more).

We’ve just started speech & language after 2 years on the waiting list.

A previous paediatrician mentioned that he has wide set eyes and his head is very big and he has a flat nose ridge? She said we could try genetic testing but the doctor never put us forward for it.

My son is still a baby I feel in his mentality and development.

He is still in nappies, it has been so impossible to potty train him but we are trying our best. He will only eat certain foods. He drinks from a bottle because it is the only thing that calms him during a meltdown, we’re trying to introduce him to beakers and cups but he won’t have it. He has meltdowns daily and hits his head so hard. His cries are like a baby cries, I can’t explain it. He can’t draw or read, and he’s started attacking me and his dad (my fiancé and partner of 6 years) every day. He rips my hair out, scratches my face, my arms and legs. There have been moments where he is so strong I cannot get him off me and I cry because it hurts so much and he laughs because he finds my reaction funny.

Every time I talk to someone they say we’re doing everything right; and tell us again that he is very delayed.

But I look at four year olds and they’re playing, drawing, counting, we can’t even go out for dinner as a family because he will refuse to sit and screams. We haven’t been out in so so long.

There have even been times where he takes his nappy off and spreads poo all over his bed on purpose.

I just don’t know what to do. Surely this is more than than autism and a delay?

We have seen every professional so far and I have another doctors appointment tomorrow for him because I just know something is NOT right.

Any advice? Is this normal? I just want him to be happy and have a happy life.

Have you tried using pecs/visuals for communication? If he is non/pre- verbal, having a selection of photos or symbols for items that he may want, that he can bring to you, may help with his frustration. It needs a lot of perserverance but start small with just a few items and be consistant with showing him that the picture matches the item each time. Maybe start with a photo of his favourite snack or a picture of his favourite tv programme. Have them Velcro’d on a board or a little book so he can access them when he chooses. Then when he understands that he gets what he asks for, with these few pictures, go bigger and introduce more.

You could introduce signing or makaton. I did a baby signing class with my son when he was younger, he has a genetic condition and is also autistic. Before this we started off just making up our own signs (wiggle of the hand for a snake for example) as long as we both understood them then the communication need between us was being met.

It sounds like you are doing an amazing job. These are just things that helped my son when he was younger. It is so hard when they can’t use language to communicate and I really feel for you as I know how hard it is.

You might also want to look into applying for DLA to help pay for some of the additional expenditures to help with his needs, and possibly Carers allowance, if applicable.

Also, I would advise applying for an EHCP early, to make sure it is in place for when he starts school. Special schools can be difficult to get into as there are so few spaces, so gather as much evidence of your child’s needs as you can for the EHCP.

Why do you believe that?

When your child is being assess for ASD, find assessor will take your own history from pre pregnancy to post birth and developmental milestones. The mother will be asked if they drank alcohol during pregnancy. FASD has specific visible traits which ASD doesn’t have so not sure how you can think that a significant number of autistic kids actually have FASD. My own child’s autistic but I am completely tea total. They definitely don’t have FASD. I work with autistic young people and also some who are diagnosed with FASD. Some even have a dual diagnosis as although there are a crossover of some traits there are also some specifically different ones

Re-read OP's post and what she asked.
Suggest you stick a cushion on your desk.

You're utterly wrong. As wrong as you could possibly be.

What a ridiculous thing to say, I'm embarrassed for you.

I am going to bookmark this page as my son is exactly the same as yours, but he's 5. He has been in a mainstream since September (ffs) and we only just got the LA to concede before tribunal to get him in a specialist from this Sept.

My son is getting more violent and is full on, won't stop running. Undersensitive profile and poor sleep. I too am banging my head against a wall as I just want the intellectual disability and ADHD diagnosed now as it is very obviously severe and I want to be able to access medication (he screams in the middle of the night for no reason and all day). I think people form an opinion of what ASD is and don't realise that some children are really affected by their symptoms. It is hard to challenge their view sometimes.

I feel professuonals are reluctant to diagnose in the UK as then you will need to access services, as if ignoring the problem makes it go away. 🙄

I'm glad your EHCP and school was sorted before he started. That was such a battle. A lot of people reassure me that this can really impact development positively. I too have lost hope for my son but some of these stories are encouraging. I'm quite isolated in general due to my son's needs, but MN has helped, but I've heard speaking to other parents also really helps.

My son is a lovely boy and lots of fun. He is generally cheerful, but i think lack of his verbal communication and poor sleep has made him deteriorate. Lots of people say he's a handsome boy and love a cuddle as he's very affectionate (until he sinks his teeth into their shoulder or throws their glasses across the room :)

I think with genetic conditions different ones share similar traits, so how do you know FASD doesn't as well? Do you know all the physical signs of ALL genetic conditions and know that those FASD traits aren't shared with other disorders? I'm really struggling to see your logic here. I expect there may be some cases, but I don't think it is as much as you are judging.

Diagnoses do help - as I mentioned I want an ID diagnosis for my son as it will help access services, but largely people are treated on their needs, not their diagnosis, so if the child with FASD presents the same as ASD, they will probably get similar interventions anyway.

Sadly you are clearly lacking in knowledge about FAS. It is better to support those who have children with FAS by actually appreciating that it DOES only take one glass.

I have had a read and the literature is not clear ,one study said even one glass of wine can cause FAS and another said there is no evidence that drinking moderately throughout a pregnancy causes an adverse side affects to the Baby
It also says the department of health recommend no alcohol as some women underestimate how much they have drunk which I understand
I also understand that one person's moderate drinking is another person's heavy drinking its very subjective
I'm not advocating drinking in pregnancy it's probably best all round not too ,but it's not
But even if the Op did have the odd glass of alcohol during pregnancy that's probably not what's caused her child's disability and to suggest it might be is insensitive at best .

Virtually everyone of my generation would have FAS if one glass of wine could cause it. Our mothers were encouraged to drink stout when pregnant, for the iron. And there was absolutely no advice to give up alcohol (or smoking... virtually everyone smoked in the 50s and 60s).

Let's keep things in proportion here.

Has anyone seen the painting Gin Lane? I believe women (and basically the entire public) drank cheap gin at that time because the drinking water was filthy. Surely virtually everyone would’ve had severe FAS and it’s surprising the human race continued after that?

I remember reading about it in history ,yeah they all drank gin or beer i hink ! Isn't there a Beer Alley?

They used to give Guinness to pregnant women while in hospitals.

I had (RIP) an alcoholic auntie who drank daily through all five of her pregnancies. Miraculously, only one of my cousins has FASD. It's not as simple as saying one glass of wine can cause FASD. It increases the risk, but there is more to it than that.

It's so tough. My 4 year old is very similar to yours. We have been told his development is in the 8-20 moth bracket so it might be that this is the case for your son too.
You have done an amazing job by getting him diagnosed, getting him S&L therapy and getting his EHCP sorted (unfortunately we have none of those things mainly because nursery fucked up his EHCP).
Is it just his physical features you're worried about. Sorry no experience with this but with the behaviour it could be autism but also global delay too. I think my DS has both.
I hope the doctor reassures you or gives you some answers. I hope things go well for you and your LO.

I think we could end up derailing a good thread regarding the FAS, but I just want to say that nine years ago the NHS said you could drink 3 units of alcohol per week. A friend of mine definitely had her three units (though I would not say much more) and she smoked about 7 fags a day and was advised NOT to give up completely by midwives due to the stress it caused her body. He kids are fine. I was good and ended up with the autistic child.

I also got told by a health visitor that when I went into to labour to 'try to relax, have a glass of wine'. This was only nine years ago!

Thank you for posting this thread OP. I know it's hard and it's hard every day, but it's nice to know I am not alone. I really do feel like my child will never develop past a toddler mentally.

@Rosebel i don't mean to worry you, but get on the case ASAP with the EHCP if your child is 4. Ours took 40 week, not 20, and even then we had to go to a tribunal to get a specialist named on it, as there were no spaces and despite the fact they had agreed at their panel that it was needed. We had to hassle them a lot to get it done. It was a lot of work.

I think you can apply for an EHCP yourself, but just get a statement from the nursery. You will have a local SENDIAS you can contact or IPSEA and Contact are charities that can help. It is a bloody nightmare, but you will get there in the end. I just wished I had done it sooner as my son is spending reception in a mainstream. The school have been wonderful though, and better than I imagined. I also found the nursery statement banged on about strengths and I had to tell them to be negative about his development and that it didn't reflect on them.

Hi, my son is very much the same as OPs .he is 4 currently. Do you have any advise on what I can do now to make sure he grows up happy ..he really is a happy boy as he is already but he is non verbal and some days I cry because i feel so sad and I dont know what I can do to help him
He is also on Speech therapy and group Ot at school but i dnt thnk they do it to him yet as he is only on nursery. Is it worth getting Ot prvately? What has helped? Thank you.

I think its good to teach your son how to use the toliet and help him adjust to it. Over time he will improve and stop wearing nappies.

He sounds like a beautiful little soul. I’m sorry things are so challenging for him, you and your family. You are a good mum. 💐💐💐

Because it's just that easy ?
What experience do you have in toilet training non verbal disabled children ?