I've had enough but no escape

[treefox3513]

I feel so guilty writing this. All I wanted was a family. I have a 4yr old and a 1yr old. For 4 years I have been trying my hardest to help my son be happy. He's been so difficult since the start.
He is 4 years old and still constantly wets the bed and poops in his pull up at night. He wears pull ups at bedtime because of this, he wees right through them and 'saves' his poo for night as well. Every single evening or during the night we go in to a mess.
He has a potty in his room, we have tried sticker charts, books, explaining, bribing, being patient... it isn't working.
He mostly wees himself during the day, he goes through 4 or 5 pairs of underpants.
For most of his life he has been unhappy. Mostly crying and screaming. Didn't start talking until he was 3, very touchy.

Now that he can talk his mood is generally angry. He says nasty things. In public he screams at us not to touch him. People stare.
He slapped me across the face the other day as I stopped him doing an activity he was enjoying (time was up at swimming).

He refuses to eat 'tea' type meals. Point blank refuses. Again we have tried everything mentioned above. He eats sandwiches and some fruit and veg. Tea times are mostly screaming and crying.

Just on the way to the park this morning he stopped walking and demanded to be carried, he screamed and cried, really started sobbing. He is too big to be carried. So we had a meltdown to deal with on the side of the road.

He talks a mile a minute all day constantly.
I barely talk to my husband as there is no let up.

My 1 year old is constantly crying. I'm really not exaggerating. She just cries all day every day. She cries because she wants her shoes on, she then cries because she wants them off. Same with a jacket, hat etc. I've put her down for a nap because she's just non stop crying, won't eat any lunch etc. She's still just crying.

I can set them up with activities in the garden and they will both just find something to cry about. Crafts and messy play will result in tears.
With the 4yr old I'm at a total loss. He doesn't seem to learn from his bad behaviour that what he says and does upsets people. He just keeps doing it.

Everyone is constantly stepping on eggshells around him. We need to go home from the park and he has both me and his dad bribing him and convincing him to come home. "We can do xyz, you can have a lolly, it will be great etc'

I like to think I'm a good parent. I work hard to give them a nice environment. They have plenty of days out, trips to the park, toys and stimulation.
Also they have lots of love, plenty of cuddles and down time, movie afternoons, chilling with cebeebies.
I'm totally at my wits end. Neither if them are happy.
My husband and I are exhausted. We are both now on antidepressants and haven't had sex for a year. Intimacy has gone.

We don't get any time to ourselves.
In the evening we are usually changing and washing pjs and bedsheets and the 1 yr old cries for most of the evening in bed.

We recently went on holiday (local ish, to a cabin) and my husbands mum came with us.
She was very surprised at our evenings, which were spent going up and down the stairs trying to stop the 1yr old crying, bringing her down, giving her milk etc and then trying to sort out the 4yr old and his pull ups, sheets, toileting.

Most of the activity we did on that holiday they both just screamed at.

I expected parenting to be hard of course. But this is excruciating. Relentless. I can't make anyone happy. I can't give up either.

[PurpleCloak]

Why are you having to wait until July for blood results? You need to complain, tell them it’s urgent and you need the results ASAP. Complain to PALS if you aren’t getting anywhere. Five months for blood tests is not ok. And if it is coeliac, he will need another blood test or biopsy after so that will be more waiting.
One of my children has it and was very similar to your son. It’s also genetic so there is a change your daughter could have it too.

[Susannahmoody]

Sounds so tough op, hope you get some help 💐

[DancesWithFelines]

Agree with a PP that it sounds like PDA. There's a podcast called PDA Parenting, two American mums chatting about their experiences. Why not give it a listen and see if you relate to any of it

[RhubarbTea]

I'm so sorry, it sounds intensely challenging. I do think he may have some extra needs - possibly autism? - so I would push hard for the assessment, and in the meantime I'd seriously consider completely removing both gluten and diary from his diet for a period of at least 4-6 weeks and just see how he does. Don't change much else. It seems silly and a bit expensive but you are at your wits end and don't have much to lose, so it may be worth a shot. You may find it helps him somewhat even if it doesn't completely transform the situation. I do hope things get better for you soon.

Can I also ask, do you feel your husband may be a little bit in denial about the extent of your DS's issues, and do you feel a bit on your own with it all? If one parent is playing things down or having expectations that are not realistic/out of sync with the child you actually have, that can be really lonely for the other parent who is more switched on and less mired in denial, making them feel almost like a single parent at times. In some ways it can be lonelier than being single.
Sending warm wishes your way and hope things get better.

[ElspethFlashman]

This all sounds very familiar.

We had similar. We had a lot of problems in creche with meltdowns but we did think he was just challenging.

Then he got to school in the September of 4 and the teacher pretty much within 6 weeks was like HELL NO, HE NEEDS AN ASSESSMENT.

Our mistake was waiting for a public assessment. We struggled the whole school year and could not have been more relieved when school closed in March 2020 for Covid.

We decided to get a private assessment that summer and he got a diagnosis of Combined Adhd.

A few things have changed since then:

1. He's matured a bit and has gotten much easier to rationalise with.
2. We now discipline him in a way very specific to his condition. Regular disciplining just escalates it.
3. His school have developed specific strategies for him in the classroom because they have a diagnosis. He has an SNA.
4. We realised we had to be a lot more relaxed about the toileting. He didn't get out of night nappies until recently and he's 6.5. He still wets the bed once a week, we use a pad under the sheet.
5. We realised we had to recognise the things he was good at, his memory etc. and not compare him to other kids.
6. We just started to view him through a very different prism.
7. Meltdowns that he actively tries to control /meltdowns that only last 10 minutes are a reason for positive feedback. We praise his efforts to re-set.
8. We got very strong boundaries, apologising is absolutely non-negotiable and he loses TV privileges when he hurts people's feelings or isn't gentle with his fists.
9. He gets praise for a lot of social behaviour which parents might take for granted. He gets a lot of praise if he let's someone else speak etc.

I won't lie, we still have meltdowns. But only about once a fortnight now (though they may kick off about three in a 48 hour period) and the rest of the time he's settled. And 75% are of much shorter duration.

He talks non stop still, and he has an oral fixation and chews everything and fidgets with everything, and he still will get an overwhelming temptation to rip up tissues etc and he has ripped a foam bathroom mat, but he generally leaves books alone these days. (He learnt that he immediately loses whatever books he tears, so that put him off).

A third of it is down to him getting older, a third down to the school, and a third down to us adapting our parental approach.

If you'd have told me when he was 4 that I would be feeling this positive, I would have scoffed.

[Creamteayesplease]

Does he have these moods at nursery too? (I think you mentioned before, prior to the graduation that nursery had no concerns?). I’m wondering if having a defined routine is extremely important to him and anything deviating that, including new situations and changes to existing routine is more than he is able to cope with because he may be feeling overwhelmed and frightened? With the football, you could cancel but alternatively you can take him again next week but just to watch, run around the boundary field to get him use to it, with absolutely no expectation that he will join in for this session or in weeks to come. I would tell the coaches what you’re doing and why so they can support you without going over and trying to get him to join in before he is ready. You can tell him that he only needs to join the class if he wants to, so the pressure is off him completely. I wonder what he will do and if eventually he will join in on his own? It may be that he is frightened of the new situation and he needs time to watch and observe etc - this may require lots of patience!! (My grandmas advice to me when my children were little was that it really didn’t matter at the age of 4 whether they joined in or not but to keep gently introducing them to new situations. It took many swimming lessons before my daughter left the side of the swimming pool and would actually get into the water, and every week I just would take her and we would sit at the side together and just watch. I would just smile at the other parents and focus on my daughter rather than worry about what others thought etc. Then one day she just got in the pool and she was off!..years later she is a member of a swimming club. I nearly gave up after the first lesson though, as it was an absolute disaster and she screamed the place down, pooed in her costume and threw floats across the pool! As a parent, I just felt crushed and so embarrassed! X

[Jellybabiesforbreakfast]

Your little one doesn't sound naughty, he sounds overwhelmed and stressed. I think you need to remove some of the stresses.

I agree with tackling one thing at a time. I'd tackle the behaviour first. Go back to nappies, serve meals you know he will eat (even if they're monotonous) and make sure you get him out of the house every day for exercise on days he's not at nursery. Exercise will also help with constipation which sounds like it might be an issue.

My DC was late to potty train. I just left him in nappies and showed him some Blaze/Paw Patrol pants and said he could have them when he started using the potty. Eventually, when he was ready, he did. The 'cold turkey' no nappies approach didn't work for him so I left him in a nappy and sometimes he used the potty and sometimes he didn't until eventually he always did. Very non-stressful and very few accidents. In my experience, lots of 4-5 year olds still wear nappies overnight.

I'm sorry you're having such a tough time .

[ineedaholidaynow]

Did you say you recorded the graduation, could you show the GP that recording and say that is what you are having to cope with daily. Or if that recording is not appropriate as had other children in it, record another meltdown at home.

[Ilovechoc12]

Oooo sorry you are having a bad day.

It might be your son is struggling to communicate and the meltdowns are the way he’s saying he’s finding it hard.

Honestly he sounds just like my son he’s got pda . It’s all about anxiety, control, and sensory issues are all mega issues. Melt downs and mood flips are MEGA and last hours. It’s described as a Coke a cola effect - he’s holding it in and then they explode over nothing. Have a goggle on that condition.

It’s really hard. Tomorrow is a new day. Have a chill out day today.

Ring the dr and demand a referral - I waiting 7 years saying he will grow out of it ..... he hasn’t but now we how to “talk” to him to let him have control and options .... to make all our life’s easier. I might be totally wrong but he sounds just like my son.

Really not easy mum !!!! Keep going !!! You are doing a great job !!!! Your son loves you he’s just finding it a bit hard - keep fighting for him at the drs to get support xxxx

[treefox3513]

@Creamteayesplease he has them daily, but they could be about anything. He could wake up fine but once we ask him if he wants breakfast he will scream no I'm not hungry and hide or throw something. Then once he is in that mood he won't do anything, he won't go to the toilet, eat, get dressed, talk unless he is shouting and these moods can last for hours. Then suddenly, com nowhere he will announce he is happy now and eat something or get dressed.
The moods aren't specific to anything. It's everything tbh

[Creamteayesplease]

How often is he having these mood swings/ meltdowns? Is it when he needs to conform in some way, or could it be over anything at anytime? Also, does this happen at nursery when you and DH are not there?

(Sorry for the all the questions, I think it will help trying to get more of the overall picture. Also, sending a virtual handhold!) x

[treefox3513]

@DaisyDreaming I've posted a thread before about him and it was mentioned so often that he may be a coeliac that that's what sparked me to get him allergy tested. So he's had a blood test in February and we are waiting for the results but they won't give them to me until July when the dr will ring. I don't know how else to access those results but he's suffering with something :(

Sometimes his poo is green, it's been purple once. It's always been bad since he started solids

[DaisyDreaming]

I’m sorry today’s been such a bad and upsetting day for you all

[DaisyDreaming]

@treefox3513 when you said about his poo being lose it reminded me even more of my friends boy. He was so full of anger until they found out he was a coeliac and there was a huge change in him when he went gluten free. He is probably on the spectrum or had adhd but the change in him once he had been off gluten for a while was like night and day. I’m not suggesting you cut out gluten but might be worth looking at as he is having stomach problems

[treefox3513]

@Creamteayesplease he was in a good mood. We told him where we were going and what we were doing and what was happening afterwards. He ran in to nursery, happy. Then that.
When he goes into these meltdowns/mood swings he will suddenly snap out of it, through no action of ours, then he declares he's 'happy now' with no explanation of what caused him to be upset.
He did this about 30 mins after we left, but I was still so upset I had to leave.

[Creamteayesplease]

It sounds like there has been some progress on the continence but I’m so sorry to hear about the nursery graduation. Do you know whether he was agitated before you arrived for the graduation? Had he been happy at nursery up until this point? X

[treefox3513]

It verges on being outing but I'm so fed up.

I took on board some suggestions and he is now in a proper nappy overnight. His bed isn't wet at night now, but usually is in the morning so I'm going to get puppy pads.

Last Sunday I took him to football club and he screamed and whined, wouldn't join in, shouted at the coaches when they came over to help. He does usually join in but the past 3 weeks have been like that. In the end we just had to leave.

Today he had a nursery graduation. The whole cap and gown and stage to get your certificate etc. My husband and I were sat there recording as all the children walked out in to the stage. Let me tell you my heart SANK when he was the last one, being carried, not wearing a cap and gown and was shouting and crying. He sat with me for the ceremony, refused to wear his gown or sit with his friends. He shouted at his teachers when they came over to help. I just couldn't help it I started crying. See all those children having fun on the stage, some have been in the same class as my son since they were 9 months old. It was heartbreaking. We had to leave amidst a flurry of apologies and sniffling from me.

My husband is now in a foul mood. I've come to a local coffee shop.

I think my plan now at this stage is to contact the paediatrician who he is still under, ask for another assessment looking at his sensory needs, cancel the football (it's an expensive course of lessons, no pint if he doesn't like it) and I don't know. Leave him alone? Just let him watch tv and play on the tablet? Seriously everything else we do or try to results in a meltodown

[Maxiedog123]

I have to say many of the things you are describing sound like my son who has autism with a PDA profile. Look up PDA.
Regarding night toilet training: There is a hormone called ADH that is released at night to concentrate your urine overnight, in some kids it doesn't kick in til 7 -10 and they wet their bed at night til then. Tends to run in families. It sounds like he needs to see a continence nurse specialist about this and the loose bowels. While waiting I'd put him back in nappies at bedtime. The getting up at night and sleep deprivation will be making all the issues worse and exhausting you.

[Dreamer2468]

I have a 10 year old with ASD who does the paper ripping thing but only with his favourite books. It is really bizarre he will rip them up, put all the pieces in a drawer and the next day ask for another copy. I have stopped leaving books in his bedroom and he now has an audio book before bed.

A lot of the issues you have seem to be sensory. Have you asked for an OT referral as they can help you put a sensory diet in place. My son has a weighted blanket and takes melatonin to help him sleep. We find crunchy foods help with the paper eating. He loves corn cakes, poppadoms, nuts. You could also try rice paper. We just give my son the same food every evening. It is actually a pretty healthy selection and saves battles. If your son eats fruit and veg that is great. Just give him what he will eat.

[SleepingStandingUp]

Hahah you can't faze me with poo talk lol. DS had big solid poo's daily, it means nothing, it's all about the type. Doc pressed his abdomen and could feel it all in there. Sometimes if it's blocked you just get sloppy poo coming through as overflow.
Good luck with the docs

[Frownette]

It won't last forever though it might feel like it at present. Hugs and flowers to you. Definitely get the tests done which pp have mentioned. One step at a time

[RandomMess]

Dairy intolerance can cause constipation.

[treefox3513]

@SleepingStandingUp I did consider leaving some paper in there but he's eating it sometimes, or just chewing it and spitting it out and I'm terrified he will choke
I'm definitely going to have a look at this constipation theory, because he poops daily I just assumed he wasn't constipated. He will poo in his pull up and we will change him, and when he wakes in the morning there's more poo, it's like it all comes out at night.
Sorry for all the poo talk

[SleepingStandingUp]

Also if he likes ripping up paper, save your post or newspapers, pick up some cheap paper from PoundLand and let him. There's something in it he finds comforting from the sounds of it.