To think that there may be something underlying wrong?

[BringbackBrookside]

I’m worried about my toddler.

He’s 2.5 and has been utterly miserable most of the time since the day he was born. It sounds crazy but he was born eyes wide open, completely alert all wired up. At two months old he was refusing to lie down and wanted to be propped up all the time to see the world.

Where do I start? I have two older children and although I know babies and toddlers can be hard work I’ve never experienced anything like this. I’m afraid to speak to anyone in case they just have me down as a parent not coping.

He’s having almost daily tantrums that can last up to and even over an hour, triggered by the tiniest thing such as giving him the wrong banana from the bunch, or attempting to take off his coat on coming in the house.

As a baby he was never happy and never slept day or night, he only eventually slept when we started cosleeping. He would never sleep out and about I could walk for miles with him in pram sling or pushchair but he’d never sleep. We eventually got him sleeping in his cot through sheer persistence and routine but it’s all gone out of the window now and he refuses to go to bed without one of us lying with him.

I get home from work and he screams the house down from the minute we walk in until bedtime, I give him food immediately on coming in so not hunger.

The moment he opens his eyes in the morning he screams and cries for my husband to fetch his milk, and it has to be my husband, if he doesn’t get his milk immediately he becomes inconsolable. We’ve never known him to wake up happy.

He refuses to go in the pushchair, refuses to walk, refuses to go in a highchair, and will just climb out, it’s got to the point that unless he’s in a good mood I cannot even nip to the shops.

His speech is delayed, the health visitor says he’s within normal for his age although I know he’s behind his peers. Nursery contradict this and I’m sure have me down as someone who just sits him in front of the tv and ignores him.

He doesn’t show signs of anything and plays beautifully when he’s in a good mood, he’s loving, clever, will play nicely alongside other children, he’s fantastic, but I feel like his tantrums are more than just normal toddler tantrums. It’s taking over our whole life. I don’t get 5 minutes to even speak to my other children or my husband because the youngest is screaming.

Just at a loss what to do, will he ever grow out of it?

He sounds just like my brother, there was a huge age difference between us so I was a teen when he was born. He would act like your child. All I remember about growing up with him around was screaming. He had some odd behaviours like you say, but things like, only wearing clothes that he would pick out and they had to smell right. Only ate the same foods, was very slow at learning. When he went he went, there was no stopping his tantrums. My mum who already had 3 children really struggled with him, he used to pinch her and bite her. Anyway, there turned out to be a few things wrong with him, firstly he was in pain, he had a throat issue that was causing pain and he couldn’t vocalise it, some of the crying and bad behaviour stopped after that was treated but he was a very difficult child. He was later found to be highly dyslexic and mildly autistic. Your not a bad parent, please don’t think that, you need to seek help. Good luck.

He’s already been referred for speech therapy but there’s a long waiting list even to be assessed. It was his nursery key worker who said that all they’ll do at speech therapy is what I should be doing at home anyway.

You're getting some well meaning but very bad advice. Our school district is not an organization that wastes a penny but they had no problem sending out the speech therapist. She did much more than just read with him. She did diagnostic testing, which allowed her to pinpoint specific types of drills and exercises to do with him. She documented his progress and was there to meet with his teachers when he entered school. It honestly wasn't much fun for him and it was a lot more than story time with the nice lady. But it helped enormously.

If you can afford to, get him assessed privately. The longer you wait the further behind he falls.

Sigh

This is where I get frustrated. I raised with the health visitor at his one year check that his speech was regressing. He started off around 5 months making his sound beautifully, mama, dada, baba, nana etc. Then he stopped and couldn’t say them anymore. He was very vocal but would just say mmm a lot. Health visitor said to wait and see.

Two year check raised again, he was saying around 50 words by that point but had lost a lot of his sounds. Health visitor said all normal, sounds will come later, more important that he understands things.

It was only then months later when the nursery raised it that the health visitor took notice and referred him. Health visitor wasn’t really interested in what I had to say and only wanted to know what the nursery thought.

hi OP, it sounds grim.

Can I suggest that you try using visuals and visual timetables? Have you heard of Now and Next type ones? They're recommended for kids with autism but tbh I don't think they'll do any child any harm, and can really help provide a sense of certainty to a toddler who is floundering.

I had a very tricky toddler who turned out to have autism, and what would have made our lives easier with hindsight is if I'd used visuals from the get go, and if I'd accepted earlier on that his behaviour wouldn't respond to the type of incentives and sanctions you use for NT kids. I'm not saying your child is autistic, but if he might be, treating him as though he is might be useful for both of you IYSWIM.

If you did that:

visuals,

not feeling bad if he doesn't behave as his peers,

not blaming yourself if normal incentives and sanctions don't work,

Investigating if there are sensory triggers to his tantrums

Accepting that sometimes a tantrum is a panic attack in response to anxiety or uncertainty

Getting on the floor with him and letting him lead the play, even if that's just you copying what he does with a toy train while he appears to ignore you

... might help make you both feel a bit less like you're in an endless hell.

Apologies if all suggestions seem way off.

Also, sleep problems can be AS related. My son takes melatonin to sleep now, whereas as a toddler he just kept going and going and going and going and we never had an evening for yeaaaaars.

He sounds EXACTLY like my dd, the hardly sleeping ever, tantrums that could last for hours, hardly any words at all, and the HV kept saying it was normal, we had to cosleep with her until she was 6! And then it lessened somewhat. She is autistic and dyslexic. Although wasn't diagnosed with either until she was 8!

I felt like a bloody awful parent, people kept telling me she was normal or would grow out of it. I knew it was something, just didn't know what.

She was my first so no experience to go off. I think I would have sought out a diagnosis a lot sooner. Can you push for an assessment? When she was eventually assessed it was because her teacher had raised the possibility of autism with is and said we should see the GP to be referred.

Lots of good advice here already. You could try learning some Makaton, they do it on something special on cbeebies. It would help his vocabulary and let him communicate without talking. Also it might be worth looking into whether he has any sensory issues. Try reading the 'out of sync child' and see if it chimes with your situation. It is so hard when they are doing something totally unexpected like this. There will be things you can find which will help manage it and it will get easier as he gets older.

What is he like at nursery?
Does he have melt downs there too?

persevere with the speech therapy referal, you need evidence, and if the evidence is 'Mum is doing all correct, and still no progress' than that supporst your case.

Some of the behavioral issues may be due to frustration from not being able to express himself verbally. That was certainly the case with our son, and his behavior improved as his productive language skills improved.

You may have to get a bit stripy and demanding th the health visitor and nursery, you have two older children and know what you are doing. Don't worry about what they think of you

You've just described my son 17 years ago. He's now a healthy 19 year old with aspergers.
He was born wide awake. Didn't sleep. He was delayed in speech. Well at the age of 18 months he basically stopped speaking properly. Went to one word answers. He always seemed angry. He never seemed happy. He didn't really play with others more follow them around when he was made too.
On the plus side he's a wonderful young man, who's doing perfectly fine and in university.
Go and see your HV & GP. They will help get him referred.
Sadly he still doesn't sleep. Never has and don't think he ever will.
Good luck.

Sorry it's so tough OP.

He sounds a lot like my youngest. Boy was he hard work. Sleep was very sporadic, on the go 100% of the time, epic tantrums, highly controlling and extremely demand avoidant. At nursery he was okay...even came across as social but he couldn't keep it up...200 yards down the road..he'd ask for sweets...I'd say no, offer a snack in case he was hungry...boom. Every. Single. Day. And I never gave in, not once. He was 7 before he was diagnosed with ASD and ADHD.

I'm not saying thats whats going on with your son. But there could be something. In my experience HV were totally crap. You might have more luck with your GP. The problem with parenting courses and the usual advice for me was that it plain wouldn't work on my DS. Or it would work for a bit then not any more.

Previous posters have suggested a diary, that's a good place to start.

He does need assessing OP. I hate adding to the tirade but he also sounds like my youngest. Came out screaming and didn’t stop for years. High needs child and is autistic. A high percentage of autistic people don’t produce much melatonin so they struggle to sleep.

You’ll need to shout very loud because it sounds as if you’re being fobbed off. Have you had a letter even acknowledging the referral for ST?

We're currently in the assessment process for my DS for ASD. They have repeatedly asked if there has at any point a speech regression, where he lost speech he had achieved.
I'd be pushing VERY hard for an assessment.

If it's any reassurance my almost 2.5 year old has never ever slept unless we lay with him to get him to sleep and my 5 month old is shaping up the same. Similarly, I stopped trying to get him in his own bed due to going insane from lack of sleep. He also regularly wakes up inconsolable both at night and in the morning and can cry for a good 30+ minutes when he wakes up, including from naps.

He tantrums everyday but not beyond how I think a normal 2 year old does though. Ignoring wouldn't work though. I have to reconnect with him, offer a cuddle etc. Otherwise it'll go on and on.

If your concerned see the GP. I'd write down the things you do and also write down points like how he's not just sat in front of the tv and stuff. Name the issue - say I've spoken to hv and am beyond standard advice now, as none of that is working. Don't be afraid to say "I've tried that" etc.

There's a great group on Facebook called Therapeutic Parenting. Loads of people on there with children with all sorts of issues. Request to join and you will get loads of advice and support.

Sounds like autism to me and/or ADHD.

If you included the point that he was poorly every 6 weeks, with every virus/bug known to man, you could be describing my youngest.He was always very demanding and hard work and at times he's nearly sent me under, especially the lack of sleep, I felt like his slave at times, everything with him was difficult, he'd even cry over somewhere being too busy or noisey, I dreaded going anywhere because there would always be an issue.

There is light at the end of the tunnel, at age 8 he is very easily pleased, very happy, loving and kind.We all now laugh when someone remembers how awkward he was.Hang on in there.