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Any other parents of high needs children out there?

(30 Posts)
highneeds Tue 04-Apr-17 20:57:21

Hello,

My high needs toddler who is two is really getting me down. I feel slightly better today because I've been at work but yesterday my husband and I were in quite a bad place. I know this isn't a diagnosis and it's probably hugely subjective but he's been extremely challenging from the very beginning; loudest baby in the hospital, non-stop feeding, tormented reflux scream non-stop for six months, temper tantrums since forever, constant whining for the next year, food aversion, toothbrush aversion, endless sleep fighting, car seat wrestling, about 7000 public meltdowns/humiliations. Sorry for sounding so dramatic but EVERYTHING is a battle and we are so tired now.

The thing that upsets me most at the moment is not being able to do ordinary things because I know it will end in 5 meltdowns and I can't face it. We spend hours at soft play and hours walking and at the park because that's what he likes to do. I would like him occasionally to come to the shops or meet friends for a meal but that's a no go. That makes me sad. Yesterday we had to bring him along to an appointment which lasted 20 minutes, we bought snacks, drinks, toys and gave him videos to watch and he still caused merry hell.

Is there anyone out there who feels like we do, like they put so much in but their child is basically a nightmare and incredibly draining? I know I sound very negative, I didn't start out like this. My husband is much less emotional about things than I am but yesterday even he was beaten. He said he had totally had enough of him and that he wasn't the ideal child we'd hoped for 😢. I know to others that may sound very cruel and that none of this is his fault but he has really put us through it. We don't understand why our friends have much easier going babies and are thinking about having their second while we are peeling ourselves off the floor. I wish so much he could be easy going but I need to accept that is not going to happen and just get on with it.

Sorry for the long rant and if you think I sound like a total bastard about my child. I love him so much, I just want him to be happy but he never really is. If your child is easy going, happy and gets in the car seat without cage fighting, I imagine it's easy to feel very positive about them. No one really tells you how to deal with the negative feelings you might have about your high needs child x

Pansiesandredrosesandmarigolds Tue 04-Apr-17 21:12:52

Okay. First of all brew.

Second, I am very far from being an expert, but that does sound outside the range of normal. Have you spoken to a health visitor?

Msqueen33 Tue 04-Apr-17 21:20:04

High needs in a different way as two of my children (7,4) have autism. Mine were high needs when younger. We can't take my four year old out anywhere unless it involves running around.

Have you written it all down? It does sound unusual. I have one with no needs and she was fairly easy going. My friend does have a child whose quite wild though.

Some of those things sound very sensory to me. But it's very much an internet diagnosis as it's hard to tell. Do you do any toddler groups? Does he go to nursery?

You sound knackered though. If it makes you feel any better I often regret my youngest. I love her but life for her and us is very hard. We went out to eat the other day. Made sure we were right in the corner. She took her shoes and socks off and hid under the table watching my iPhone. She has an absolute ton of meltdowns, in shops, on the school run. It's exhausting. Speak to your hv and see what they think. Has he had his two year check?

highneeds Tue 04-Apr-17 21:20:29

Thanks for the tea pansies! I spent a long time thinking there might be something wrong, like a sensory problem or ADHD. But the more I've got to know him I think he is incredibly 'spirited', defiant, strong willed, very assertive and just very high needs really. He has very good social skills, language and appears to be very clever. Sometimes he appears to be borderline ADHD but his nursery insist they have no concerns about him and when he is interested his attention is excellent. We notice that when we pick him up at the end of the day his peers all look exhausted and have slowed down while he is still running laps around the room waving his arms around like crazy! I think he is high energy though rather than has some kind of diagnosis. X

highneeds Tue 04-Apr-17 21:29:40

Thanks for your reply msqueen. It really helps not to be judged for being so negative (I know I might be yet!). I've raised concerns with the HV since the beginning, and the nursery, and the gp, and they've all dismissed them. The HV told me I needed to be very firm with him and to use a hand signal to teach him to 'wait' for his milk and food (he would have a total meltdown if I took longer than 15 seconds, it was so much pressure). I know part of the problem is that I'm quite a gentle soul and I can get anxious under pressure, the combination of me and him is not really a good one. I've learnt to be firmer and more assertive but I find it all very draining. He would test the patience of a saint.
I agree that I do think there are some sensory issues, like he's experiencing the world in overload, but probably not a diagnosis, only because of his social and cognitive skills, but I might be wrong, I don't know anymore x

highneeds Tue 04-Apr-17 21:33:44

Msqueen thank you for sharing your regret. I know it's a taboo thing to talk about and I don't think people know how to deal with it. I wouldn't be without him but if I knew he'd be like this I can't honestly say I would have had him, I could never knowingly put myself through this. Thank god i had no idea it would be this bad because he's here now and I love the bones of him despite everything!
He has his 2 year check shortly and I will speak to the HV again. Maybe she'll teach me another hand signal 🤔

Msqueen33 Tue 04-Apr-17 21:47:30

My youngest is like this. No patience and a hand signal would do nothing but make her very very angry. My eldest has a lot of energy and is always on the go and always has been. Some signs of add but not enough for me especially as her sibling alongside her autism has ADHD too. ADHD kids can focus if they really like something. My dd can focus if she's interested. A lot of ADHD kids do have good social and language skills. It does differ to autism in that way. I think sometimes it's about surviving them and getting through it. We stopped doing a lot as it just wasn't worth it. It's hard if you're quite gentle to meet defiance and stubbornness head on.

Yes sadly no one talks about regretting a child. People make you out to be a monster but a lot of these people haven't been through it. Like I say I love all of mine but had someone told me life would be like this I would have reconsidered.

Sittinginthesun Tue 04-Apr-17 21:54:22

My eldest was like this, so flowers from me! At 2 years, he could not be in a room with a closed door...

The good news is that, for us, it got easier each year. DS is a confident, sporty, but quirky 13 year old now, and his sensory issues have eased to the point we hardly notice them at all.

The Highly Sensitive Child made very interesting reading.

NotInMyBackYard1 Tue 04-Apr-17 21:58:40

This was my DD too - I knew from very early on that she was different in some way. She walked so early, (at 9 months) she would run headlong and fall down, would race around, I couldn't take her to any of my own appointments - just like you say in your OP, she would cause mayhem. It took a year at infant school, where they had initially fobbed me off and said they would get her in line with everyone else, before they admitted that actually, they would support a referral to a paediatrician and any ongoing assessments as they accepted she was exceptionally hard to manage. In year 1 she had ADHD diagnosis and now in year 4 she has also had ASD diagnosis too.
Totally get your anger, disappointment, regret, sadness - we have been through it all, and still feel that way sometimes too. We now make an extra special effort to recognise her abilities as well as the negatives. She is an amazing artist, an excellent mathematician, she's very creative, totally fearless and will try any new sport or activity. But yes she is challenging in other ways - she will continually interrupt adult conversation, she will fidget and jump about, she will talk incessantly, she will obsess over ridiculous details, she will argue and dictate the rules to everyone around her - yet doesn't consider that those same rules apply to her - I could go on!
It will become easier to cope with OP - you will learn coping strategies and you will learn her triggers and how best to handle him. Hopefully a bit further down the line you will also get a diagnosis (if that is the case) or your DS will become easier to manage.

1000jobstodo Tue 04-Apr-17 22:01:35

A year ago, I was where you are. My dd had just turned 2. Screamed constantly as a baby, refused naps, reflux, colic, either asleep or screaming. Then tantrums started early, around a year old. Full on tantrums and no sleep at night. We used to start our days at 4am. Dd extremely active. Hated eating, fought everything, expected everything in 2 seconds. Stopped napping at 2, and refused car seat. I didn't take her in the car for months. Then clothes issues started- scratched her skin until it bled if a label touched her skin. Had to have tight fitting trousers and loose tops, no socks and 1 pair of smelly shoes. I was broken- my child had taken all the fight out of me. Spoke to hv who said sensory problem with car seat and clothes etc but... She began to grow out of it. Started wearing a coat in December. Anyway, fast forward to now, and she's a different child. Tantrums have stopped- we get the odd one but as she's bright and has good language skills (so we've been told) she understands things better. Eating is fine (ish) sleeping almost through night, and gets in the bloody car seat no trouble!
The reason for all this?! Hyper mobility. This causes sensory issues in some children so we've now been told. I would look into this (pictures online to test, can go to gp for
More info), But, if you've ruled everything out, I want to let you know that these things can and will pass. If there's no medical reason behind it I think it's a sign of a opinionated and assertive toddler. Which turns out to be lovely. I was where you were, laughed when people said they were having their second (why would you do it twice??!) but what you're experiencing does sound like outside typical toddler behaviour. So.. Cry, eat chocolate, drink wine, and grit your teeth. It'll test your sanity- but keep going! Hopefully this is temporary- doesn't make it less difficult now but I'm sure if someone had said to me about their experience id have sobbed on the floor a few less nights.

gandalf456 Tue 04-Apr-17 22:07:17

Both of mine were impossible at that age and still have their moments at 12 and 8. I agree with your hv that he needs training but you need to pick one or 2 battles. It's very difficult at that age and most involves riding it out. He will get easier, I promise..there's no point in comparing with other children. It will only make you miserable and not see.his.good points which will emerge as he matures.

Make sure he gets enough sleep. Don't take him out tired or hungry. Mornings are better. Keep shopping trips short and shop online.as.much as possible .use any babysitting offered and plenty of time out for you.

In a year, he will have nursery so you'll get a bit of time.out then too. It's OK not to enjoy it sometimes. It's not called the terrible twos.for nothing

highneeds Tue 04-Apr-17 22:13:34

Thank you so much for your supportive replies everyone. When I think back, we have come a long way, we know what his triggers are and have found some ways bribes to negotiate round these, they far from always work but we managed his last hair cut without bleeding ears and that was a huge breakthrough! I really hope it gets easier but i don't want to get my hopes up. People often say everything is a phase but I know this isn't, it's his personality. I really hope he can chill out just slightly. It's like his starting position is always suspicion and fury and I don't understand why because we've always met his needs as quickly as humanly possible! X

saracrewe2 Tue 04-Apr-17 22:16:52

I was thinking that this behaviour seems outside "normal" limits until I saw that nursery have no concerns coupled with the fact that you say you have anxiety. Is it possible that he knows he can get away with a lot with you? My nephew's behaviour is absolutely horrendous, all of the things you have described. It was only when he started nursery that we discovered that he was only liKe this around dsis (who has anxiety/had PND), who was actually facilitating his behaviour by constantly giving in to his demands. Even now he is loud, bolshy, extremely demanding around her and he is 7. Her and her DH have labelled him "highly spirited" and "highly sensitive child". They are rather confused about why he behaves so well in school and is a mini monster at home. It is so tiring watching DN bark demands at them and they are running rings around him. Dsis and DBIL used to be terrified of his tantrums and as a result constantly gave him what he wanted.

What happens if he doesn't get his way, eg his dinner within 15 seconds? How long does his meltdown last? How is his behaviour/form afterwards?

laurzj82 Tue 04-Apr-17 22:18:50

My DD is like this. She has just turned 3. Not getting far with HV at the moment as she is a different child at nursery so they have no concerns. I am convinced she has a sensory processing issue.

highneeds Tue 04-Apr-17 22:23:08

Sara I agree, his behaviour is the worst for me but also his dad. The nursery love him and report no concerns. My MIL looks after him sometime and agrees he has a temper and is 'spirited' but doesn't find him how we find him. I agree, he pushes his luck with us more than anyone, but probably because we are his parents and he is himself the most if that makes sense. I think we have let him get away with things because it's very hard to 'discipline' one so young who displays a high level of distress incessantly. We've discussed now how we need to put our foot down because it is tearing us apart. We've started using the naughty step which he understands. He would have 200 meltdowns in a day at an ear bleeding volume 😢

oldbirdy Tue 04-Apr-17 22:27:21

I have 4 kids. As toddlers I always said
#1 got distressed (he turned out to be autistic)
#2 got angry
#3 got frustrated
#4 whined

#2 was by far the hardest. He had huge meltdown that lasted for ages. My eldest had many many more meltdowns but was easily distracted and reassured. #2, once he got started he was uncalmable.

He is 13 now and (mostly) incredibly sensible, thoughtful, cuddly and I am really proud of him. His "highly strung" nature turned out to be a highly creative talent, he is an artist and film maker. But I wouldn't go back to his toddler Hood for all the tea in China smile

Your dh is wrong though. Ds is your teacher, you are his student. He is teaching you tolerance, adaptibility, resilience. He is exactly who he was meant to be and if everyone was a conformer, a follower, we'd have no innovation, no entertainment, no amazingness (is that even a word??). You'll be fine. Just remember he is not doing any of it "in order to" annoy you or frustrate you. Easier said than done smile

highneeds Tue 04-Apr-17 22:27:56

Just to add, I don't have an anxiety diagnosis, but I meant I have a bit of an anxious disposition.

1000jobstodo Tue 04-Apr-17 22:42:56

It may sound flowery, but if he's sensitive to labels such as 'naughty' in naughty step and reacts badly to that, we instead use a 'thinking place' which is same thing, bottom
Step of staircase. This is a place where dd thinks about the behaviour for a minute before we talk about how it would make them
Feel, and ask why they think the behaviour made you feel disappointed. Anyway- having a child with good language skills will get them thinking about their actions, learn empathy for how you're feeling, and get them to recognise the behaviours that you will not accept. This won't label your ds as 'naughty' (which may bother him if he's anything like mine!) just a thought- worked for us. I now just say 'this is the warning, you'll have to start thinking about this behaviour if it continues and why I will not accept it' and she actually listens. Took 10000 times but it works. Even words like 'right now' upset dd though so depends on your ds's lsvel of sensitivity. Other thing is to acknowledge their emotion (google it) just as they're about to start tantrum. This has worked especially well for the meltdowns when trying to stop dd eating a sticky thing she's dropped or whatever the tenth tantrum was that day. I read about it somewhere and it's brilliant as tantrum is them feeling frustrated as they can't convey what they're feeling- do have a read. Good luck, keep going!

highneeds Wed 05-Apr-17 10:30:25

Thank you everyone for your helpful suggestions and support.
I just wanted to let you know, after hitting rock bottom I somehow woke up this morning with strength! He threw a total sh*t fit when his drink wasn't immediately there at 6:30am (I was trying to get it ready) and I thought, I can't have this anymore, I can't live like this. So naughty step it was, cue exorcist screaming at 6:30am with DP trying to sleep after very late stressful shift. But I thought if I don't face this now I'm going to be broken and he will become a monster. Naughty step a number of times and threats of naughty step about 50 times and he did calm, apologise and sit at highchair and eat breakfast and drink drink without lobbing it.

DP came down and I told him, I don't care if he screams and cries and goes on naughty step all day, I'm not living like this anymore. DP said that's the right thing, if we don't deal with behaviour now, while people say 'poor darling, must be teething etc', in future he won't be so cute and he will be unmanageable.

I understand to people reading this who haven't experienced it we probably sound like utter bastards. I know some people are of the opinion that two is too young for the naughty step. I never actually wanted to use the naughty step but we have tried everything else and nothing works. He fully understands the naughty step and knows to apologise.

Do you know, for the first time since I can remember ever, he sat at his highchair while I drank a cup of tea in peace. And on our way out, he didn't meltdown when I said he couldn't go on his scuttle bug now, got his shoes, and walked to the car, stood and waited while I opened door without bolting and got into the car seat without cage fighting me. I actually can't believe it, it is nothing short of a miracle! I'm in disbelief!!!

I'm going to be strong, boundaried, firm and hope this continues! I'm sure talking to you on here helped me find my inner strength so thank you! X

LuchiMangsho Wed 05-Apr-17 10:40:06

Well done. No judgement here. I am quite a strict mum but then DS was fairly compliant (DS2 is a preemie and 38 weeks gestationally so I can't compare yet). Sometimes you have to let them shout it out a bit. He is loved. He is cared for. Waiting for his milk (ie not having every whim catered to) is not going to damage him. I have another rule, which is that I don't negotiate with/explain stuff to toddlers. Well that's not true, I do explain but I expect them to listen first and then later when all is calm I will explain my decision. Because sometimes you just have to listen to Mummy (or Daddy) and that's it. I run a fairly benevolent dictatorship at home!

highneeds Wed 05-Apr-17 10:48:48

Thank you Luchi. I like the idea of a 'benevolent dictatorship!' I think if I could have done it my way, he would have been compliant and I would have been 'easy going mum'. In hindsight I was dreaming and an idiot! But the stark reality has been that he needs a benevolent dictatorship. As DP pointed out, he will wipe the floor with us if we let him. X

elQuintoConyo Wed 05-Apr-17 10:50:35

I have a 'challenging' 5yo. He didn't throw trantrums for more than 3 months when he was 3yo, but the rest of it sounds like your son.

He makes the Duracell bunny look like a sloth! We send him to his room for time out - he still has his toys, but it is a quieter space for him. He is full of love and hugs and draws us pictures of hearts. He has no interests apart from Lego, cars, Playmobil and police. He runs around but hates sport, not interested in anything ball-related. Might draw a couple of pictures but gets bored colouring in or doing crafts after about 10 minutes. He'll watch a tv show but not sit through a film. He doesn't have access to computer/tablet.

He plays alone quite well (he doesn't have siblings). Still hates hates hates the bath- but loves the pool/beach/rivers/puddles! Still a fussy eater but eats well at school (we are abroad, lots of grilled fish and vegetables here).

But everyday there is a struggle with something. His birth was horrific, nearly lost both of us, but luckily i didn't suffer from PND. He had colic until 4mo. There is no way on earth we would ever have another child, no way. And, like you and a few other posters, i have been guilty if loving but not particularly liking my child.

In 5 years we have had a baby-sitter once (when i had an operation to fix birth problems). Loads of DH's family here, i have great friends who love kids... just not our kid, it seems. It has been a long struggle.

flowers

GuinessPunch Wed 05-Apr-17 10:52:19

www.thefussybabysite.com/blog/why-its-not-just-colic-or-fussiness/

Read this if you can flowers

noisewithdirton Wed 05-Apr-17 11:05:56

My firstborn burst into the world as loudly as possible and hasn't slowed down or shut up since! No special needs just massive energy and loud voice. Unfortunately we didn't manage it so well when he was a toddler and I just used to get really angry with him and myself. Miserable. As he has grown up he has calmed a big but needs minimal sleep, lots of exercise and very firm parenting!! He will still have the odd screaming fit if he doesn't get his own way but I have learned not to respond! One thing that helped us was to stop comparing him to other children and wishing for the child he 'should' be. Focus on his positives and try to ignore the negatives as much as you can. Also don't give in because of the fuss - that is one mistake I used to make. He will likely grow up to do amazing things because of his will and his intelligence and his persistence. Think about that! (Drama, music and performance classes were a godsend for us too!!)

highneeds Wed 05-Apr-17 13:47:44

Elquinto, I can understand you sticking at one, we will never have another one either. I couldn't go through this again, no way. I know what you mean about the Duracell bunny. I get really envious when people talk about having a lazy day and cuddles on the sofa, my boy won't sit still, he would climb a mountain everyday if we would let him!
Thanks for the link Guinness, I enjoyed reading that. The amount of times I've been told he's feeding off my anxiety! But I know that's not the sole reason he acts out because I've had time away from him at work or whatever and come back to him refreshed and calm and he still kicks off so that doesn't explain it fully.
Thank you Noise, I agree, I think he is going places in the future! His confidence and determination will make sure of that. X

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