DS has cried every day since birth, he's now turning 2. Possible ASD.

[Zodiejodie]

Hello everyone,
Sorry I think this may turn into a long winded post - I will try my best to keep it to a minimum though.

My DS is soon to turn 2, I can safely say in the entire 2 years of his life I don't think I've enjoyed one single bit which breaks my heart.

DS is currently on the waiting list for an ASD assessment and has had a block of SLT as he still has no clear words. I know he is still fairly young for all these worries and everyone has said it may change in time but I am really struggling with my DSs behaviour.

He had bad reflux as a baby and was constantly vomiting, hated to be held, squirmed and thrashed in most positions as was likely very uncomfortable due to the reflux. He also never stopped crying. He would scream and scream for hours on end no matter where we went or what we did. And that is still the same today with h nearly being 2.

We struggle to leave the house and go on any days out as any new places cause DS to start screaming and having meltdowns. It's been a very isolating 2 years as I have lost all of my old friends due to not being able to participate in any of the normal things parents do with their children.
I can't take him to cafes as he will just scream and thrash in the chair until we leave. I can't take him to soft play as he does the same. Any outings to places we have to pay to get into have come to an end due to having to leave within the first 30 mins due to his temper and meltdowns.

The only things left for me to do with my DS are what's inside of our normal routine- play in the house for a short time (any longer and he gets cooped up and stroppy) then walk to the park, play there for 15 minutes until meltdowns start and then walk home, go for a drive in the car to listen to songs and some days we go for walks round the local lakes.

These things are fine to do, but when it's all I have been able to do for 2 years I feel very trapped in my life.

DS also has terrible problems with eating and food. I wonder if it stems from him having reflux and vomiting constantly until he was 14 months old.
He will only eat baby jars of food and yogurts and rusks with milk.
He also can't feed himself, and won't eat unless he is distracted by something like an iPad. He also won't drink from anything other than a bottle.

For 2 years he's hated his nappy being changed and screams bloody murder every time still. He has kicked me in the face many a time during a change.

I know this all sounds very negative, I do love my DS dearly, but I just feel completely exhausted by it all now. It's been 2 years of all the hard parts of parenting and very few of the rewarding parts.

I'm finding that his behaviour is becoming more unmanageable the older he gets, perhaps it is because he is close to terrible 2s but he kicks me, bites me, hits me in the face, pulls my hair on a daily basis. I'm so fed up of being a punching bag.

I'm also so sad for DS as I feel like he doesn't get any enjoyment from life. I try so hard to do things each day with him to give him a fulfilling childhood but because of the way he is it always ends up with both of us crying.

His ASD assessment isn't for another 14 months and until then I have very little support i can access. I don't even know if he is on the spectrum which makes things even harder for me as I don't know whether it's just me failing at parenting or if he is ASD and I'm unfairly shouting at him when it all gets too much.

I have been to HVs, GP and others numerous times but now at a point where nothing else can be done.
I am on antidepressants to try to help with my low mood as I don't want to be miserable around DS all the time and make things worse for him.

I just don't know what I can do any more. I feel like my life has spiralled out of control and I'm burned out. When I see other people's children and babies the difference between them and my DS is very noticable. I almost get jealous when I see what it's like for everyone else around me, they can't relate to my struggles as their DC are so much easier.

Is there anyone out there who has DC like my DS? How do you cope? What am I doing wrong and what can I do differently?

Anyone?

I have two DDs with ASD and, although my experience when they were young was different from yours, I get a lot of what you're saying. It is very hard seeing other people able to enjoy things with their children I could only dream of.

I would suggest that you don't wait for a diagnosis before seeking support from other parents in your area. Most groups for parents of children with ASD welcome those who are waiting for assessment. There will be other families who recognise what you're going through and will be able to offer advice and support.

Do you get a break at any time?

Hi, thank you for your reply.
I'm so desperate to talk to other people about this. It's just been building up and I need to vent a bit.
That's a good idea to look into ASD support groups, thank you.

I rarely get a break. It's only me and my DP who works a lot of the time and has 2 DC from a previous relationship that he sees EOW. I have no family around apart from my mum who looks after my DS 3 days of the week while I go to work but that's all she can do as she has to work too. So the only time I get away is when I'm working which isn't really a break for me as my work environment is stressful.

It's hard. I just feel like I've run out of steam and ideas in what to do with my DS. Feels like we hit a brick wall with everything. I want him to enjoy life but I can't seem to find the way that's right for him to if you see what I mean.

I’m sorry you are having a tough time: I have a “difficult” toddler too (19 months, going through Paediatrician assessments for asd/development issues) who also was a victim of horrific reflux too.

I think you need to focus on making some stuff easier for yourself by just letting it be (if that makes sense). My son will only eat with the TV on so I just let him have it on: and at least he eats. He has a limited diet but other than trying different things I stick to at least one meal a day I know he will eat, and only add in one item at one meal that he tends to reject. It means he lives on hoops and chicken, but he will eat the occasional other item. Don’t worry about he bottle, he won’t likely be drinking out of one when he’s 7, and even if he was it wouldn’t matter.

Have you tried changing his nappy while he’s stood up watching TV? Pull-ups and CBeebies have been my saviour for the last 9 months I think!

Maybe look at having a google for ASD friendly events in your area. Lots of shops now are having special events once a month where for a few hours they turn off the flashing lights and music etc. Some play centres and theatres do the same too. Also what about places like garden centres: my son tends to cope well there because they tend to be quieter with less hustle and bustle (as long as you don’t go on pension discount days!!!) and even if he does scream and shout it’s outside mostly.

Is there a children’s sure start near you? They often have details of sen play groups and also sensory rooms that you can use for free.

Are you able to maybe look at putting him with a childminder or nursery for one afternoon a week or something? Just to give you a break?

it does sound very tough, big hug! :) the lights, sounds and smells from public places are probably too much for him, he is having a sensory overload and literally fighting to leave the place. For us it would be like having a hammer drill next to our ear. Your description does contain many red flags for autism so it's good that you are getting him evaluated - it could turn out to be sensory processing disorder and not autism. How is the rest of his development going? does he follow simple instructions? does he point to share interests like a plane in the sky? does he have any words yet? etc.

He doesn't point a lot, only within the last half a year has he started occasionally pointing with his whole hand at something he really wants but can't reach. He doesn't point anything out to share interest though, like planes, cats etc. He can follow instructions like "sit at the table, get the ball, go upstairs" sometimes when he wants to but he can't do things like "put on your shoes, coat" etc. He has only just started making sounds like words, but no clear words at all yet. He tends to talk from his throat? Almost like he has a blocked nose. I know what words he is trying to say cos I'm so used to it but I guess to a stranger they wouldn't know what he meant.

This sounds really hard and I just wanted to say that you sound like you’re doing an amazing job even if it feels like you’re not. I agree with the pp that it’s worth going to groups before his assessment and maybe post on the sn board as I think they are also helpful pre assessment.
I hope you can get some help soon you really need a break

I think it will turn out to be autism unless something else is going on. Not pointing to share interests by 2 years is nearly always indicative of autism. The reason why pointing to share interest is so important is because it demonstrates what is refereed to as "theory of mind" which infants with autism have a really hard time to understand. Theory of mind just means that an infant (from around 12M old) begins to understand that their mind is not the same mind as everyone elses mind, so what they see and feel is not the same as what their parents see or feel hence why they point to interesting things to make sure their parents see it (i.e. they share their enjoyment with their carers). An autistic child would not point or show objects of interest because they think that what they see is what their parents automatically see so there is no need to point or show.

However only a development ped can confirm any of this so you are doing the right thing in getting him assessed. Keep advocating for him, and with the right support and a mum like you he will have a very bright future ahead, you are doing everything you can and an amazing job :)