Jump to content
Sign in to follow this  
Mummyof6

New here, advice appreciated (sorry it's a long post)

Recommended Posts

Hi, I am new here, I'm not even from the uk but I couldn't find any boards in my area of the world, hope no one minds. I have a 16 month old who has just recently regressed in many areas and raising red flags for us as parents. Before I get into it,yes he is a twin and no I'm not comparing them to each other, I am comparing his behaviours and certain things now to what they have been previously. My son was starting to talk really well, he was saying mummy daddy and his brother,sisters and auntys names thank you, hello, birdy, hoothoot (the name of a favorite cartoon bird) he was pointing and waving (please do not take this as me boasting, please!) any way, he has lost it all, he was using everything in context and at the right time. He was born premature and low birth weight due to intrauterine growth restriction. He has always been small, but always been very independent and never stays still. About 2 months ago he became very withdrawn, non active, not his usual happy self, we assumed he was coming down with something as he is always catching virus' due to his low immune system. He then stopped talking and we thought he may have had a sore throat? But we started getting concerned when he didn't come down with anything and his vocab hadn't returned after weeks later. He has stopped waving goodbye to daddy from the door or gate, and doesn't show interest when he returns from work. He used to give kisses and cuddles whenever we asked but now it's a battle and if he isn't wanting anything to do with us he lashes out. He is happy to be carried around in our arms but won't sit on our lap or have a cuddle when we sit/squat to his level. When he is vocal its repetitive in sounds and movements but also sometimes very alert and can give eye contact on his terms. His tantrums are crazy and result in biting and hitting himself and others. He can break into all the baby safety locks and throws kitchen ware everywhere. We are waiting for an appointment which the paed had to cancel last week, unsure when it will be rescheduled to, so I am wondering if anyone has any advice of how I can adjust myself, our family and home to help my son feel more comfortable? Even if he isn't diagnosed with anything I know he is different in needs from my other 3, and I want to accommodate his needs and am trying to be a good mum! My heart is breaking for him!

Share this post


Link to post
Share on other sites

Hi Mummyof 6

 

Welcome to the forum. I hope you manage to find some answers and support here.

 

Do you mind giving an indication of where in the world you are? From what you are saying, you are doing everything right by following up with the Paediatritian for an opinion and advice.

 

Something that jumps out at me is the fact you say your son has always been very independent and never stays still. I can't relate to the regression you describe with regards to body contact and speech but my son was always very 'independent' and never stopped moving from very little. At this age he repeatedly did puzzles (which he was very good at) and became interested in making 'lines' on the floor of his toys or household objects. He also began to 'stack' things and could get very upset when things wouldn't balance etc and was always very interested in switches and buttons at the same age as your son. I am mentioning these things as you may be seeing some evidence of this which can be interpreted as not playing in a 'typical' manner. My son also had very limited pointing and waving and would tend to tug on a sleeve and direct to things he wanted rather than indicate by pointing.

 

If your son has had a number of health issues from birth then this will have to looked into to see if any problems have been caused by this although what you are describing could also fall under some of the symptoms of ASD.

 

Sensory problems can be a big part of having ASD. It's possible that your son is avoiding body contact if he has over-sensitivity to touch for instance. If he is being touched when he is finding this difficult (I'm only surmising here) or feels frustrated in any way, this might be the reason you are seeing him become so distressed. My son loves being touched, hugged and tickled but there are also times he can become very upset and angry if he is touched when he doesn't want it.

 

All I can suggest right now is try to look for the things that 'set him off'. Although I appreciate it will be upsetting for you to back off from your little one if he is not wanting hugged, this might mean that he will not feel 'threatened' and therefore not lash out. If it looks like he wants to be on his own, give him some space for a while. Be aware that your other children coming into his 'space' might also be upsetting for him especially if he is doing his own thing. My son is old enough now to explain to him that it is unacceptable behaviour to lash out at his sister but equally I also take my daughter out of the situation if she is 'crowding' her brother and I can see the signs that something is building up.

 

All the best

 

Lynda :)

Share this post


Link to post
Share on other sites

Thank you for your reply, I'm feeling very overwhelmed by all of this, and at the good times I can almost brush off the idea of any issues completely, then I turn around and am almost in tears when another 'sign' presents. I haven't ever felt I was unable to share my love between all of my kids, but now I'm unsure how to help him and to assure the other kids are getting enough attention too, and how to get the others to change things also. My 4 yo is very habds on with everyone and she and bubbas twin brother cop a lot of the lash, twin vrother is covered in bruises from bubbas biting. I'm in Australia, the only boards I can find atm are inactive or on fb and I don't want to discuss this in a forum on fb where all my friends and family can see as I don't want them worried, interfering or treating my baby like he isn't 'normal' (I'm so flustered and new to this -I'm not even sure how to speak in a politically correct way about it all.) I have upped the baby proofing as bubba is too clever and can break into anything we can so we are now locked out also until we find another option. The thing is that if anything I would assume bubba is hypersensitive, he is in love with touch texture, if he is frustrated we can calm him by giving him anything silky, pyjamas or his bolster pillow. He loves soft touch, like round and round the garden on his belly and this little piggy on his toes. He doesn't make towers or do puzzles but he 'invents' things all day, he will raid the plastic containers and fit kids to everything, he will make a whistle out of anything possible and it works for him even when we can't make it whistle. He also self calms with his hoot plush, if he is upset he brings it to us and we have to sing the hoot song using it like a puppet. And he hums songs for his favorite tv shows. He has been sick from birth but no tests have come back suspect, his brain scans all went well and his eye and ear tests also fine. I just hope the doctor can fit us in on here waiting list again now since she had to cancel, we were on it for 6 months pending our last appointment for both boys airway issues. I guess I shall continue researching and acting as if bubba does need some extra help and with that being less cuddles for mummy I guess, it breaks my heart every time he reaches out and I go to hug him and he suddenly decides he doesn't want to know me for the next half hour!

Share this post


Link to post
Share on other sites

Hi again

 

Of course you are worried and it's totally understandable. You are in a situation that is totally new to you and experiencing things that often don't form part of 'normal' parenting. You are seeing your other kids having difficulty coping with the behaviours your wee one is showing and his little brother is getting attacked. Do the twins share a room? Is he actively seeking out his brother to bite him or is his brother coming near and being bitten? It does sound like it's getting very hard to handle so I do think it's a case of trying to see in what situations the lashing out or biting is happening in order to try to minimise it. These behaviours will be caused by something but they can also just become habit and if it provokes a reaction it could be that that is the reason...he might simply like watching the reaction on his brother's face, not necessarily to be 'bad' but just because it's interesting (my son used to do this a lot and still does sometimes). Or it could be that he gets too near and 'in his face' and it's a way to get space back. However, you can't have your other children getting hurt. My son went through a 'bitey' phase but I think he was a bit older. I must admit that explaining to him did no good and he kept on doing it and one day he bit down hard on me and I just reacted and bit him back. I'm not advocating you do this tbh but my son didn't bite me again!

 

I can also understand that you don't want to worry your family. It probably wouldn't hurt to speak to someone you trust though as simply going through the assessment process can be hard and it would help to have some emotional support. I took my mum to a couple of appointments during the assessment process and both sets of grandparents are kept informed of developments as they happen now.

 

If you are on Facebook you might want to look at the Autism Discussion Page - you could read the information and there's no need to comment - and the author has had a lot of experience of working with children across the autistic spectrum. There are a lot of other pages on there too but some are complete bunkum from my point of view but I've no qualms about advocating this page.

 

Lynda :)

Share this post


Link to post
Share on other sites

Thanks, I will check out those links :) I have been talking to my husband, he is in the same back and forth as I now, one day we are almost certain he is nt but the next it's like a flip and you can see more and more red flags popping up. The biting is a huge issue, I have teeth tattoos right now on my stomache and back from a meltdown this morning, his brother also has more from during the same meltdown, this meltdown was the longest one we've had that isn't in reaction to bedtime, I'm not exactly sure what triggered it but he was screaming crying and lashing out for 30-45 minutes, I tried walking away, he then attacked his brother who was in his way to getting all the kitchen cupboards open, bit my stomache because I wasn't doing whatever it was I was meant to be doing. Bit my back because I sat on the floor in my own meltdown! Threw toys at the tv. Anyway nap time came and I was absolutely ready to throw them into bed! Yes they share a room, but seperate cots, they haven't attempted to climb out of them yet but little one pushed his safety screen out of the window and now the window is locked! We have horrible bedtimes at night, if we evade the routine by even 15 minutes we have an hour or more of complete horror! It's funny you should meantion biting back, I did that with my older two and both stopped biting me too, this little guy bit me the first time and I thought ok I got this, and bit his finger, he freakin laughed at me! The harder I bit the more he laughed! I was quite taken back by such a scary thing! He bites himself a lot, his wrists and fingers are always bruised and he hardly cries with any pain, he cried more getting his temperature taken in hospital and was totally fine with getting a central line and only a little sook with an immunization. He has a rediculous level of pain threshold. He cries when he falls sometimes out of frustration or shock, but if its not a meltdown it's usually a 'fake' cry. I have my appointment tomorrow, I'm not sure what i am meant to say, do I just ask her for an assessment and wait for her to ask questions about why or do I start by giving her the list of redflags an ask her what's going on? I'm not sure if we are dealing with a sensory disorder alone or as part of the autism spectrum. I have a horrible day tomorrow, hubby is at work and I have all 4, and the routine will be all out of wack, we have an orthodontist app first thing in the morning then the pead app straight after nap time which usually is our outside time, and I am not looking forward to it, both boys get very upset if we don't do outside time on time! I guess atleast the pead will definitely see some of what I will be asking her about, if that's any constellation to our emotional stability being put into overdrive testing :/

Share this post


Link to post
Share on other sites

I would resist the temptation to call his crying 'fake' even if it sounds like it is. For years my mum told me to stop 'putting on' on a laugh and this was not the case at all. It can be difficult for children with AS to gauge how loudly or softly to speak or even how to laugh!

 

It sounds really like your son is looking for sensory input, even with the biting although this must be incredibly hard to deal with! If his pain threshold is so high, he might simply not 'feel' things the way you would expect so he's trying to in what seems like disproportionate ways but probably not to him. If he doesn't understand emotions and facial expressions, this might be why he is laughing at you when you are in pain yourself, not that he is being mean or nasty. Every time my son makes my daughter cry there can be a different reaction...he might put his hands over his ears and scream if he didn't expect the noise or he might laugh because he thinks her reaction is funny. It is explained to him every time that she is crying because he has hurt her or given her a fright and she is upset and he has to say sorry too, even if he didn't mean to do it.

 

Sorry for short reply - should be getting ready for school!

Share this post


Link to post
Share on other sites

Thanks :) it's been a while since I've visited the site, we had our pead app and wouldn't you know it, I didn't get anything out! Between the 4 kids literally screaming I couldn't concentrate! The older two were meant to be babysat but it didn't work out. What we ended up with was a referal to speech pathology, the waiting list is rediculous, my daughter has been on the list for a year or so already so I hold little hope of getting either in there. Early intervention referal got lost in communication somewhere along the line and we haven't gotten any answers. My son has continued to show improvements in speech, and has gained a few words back that he had lost through much one on one and has 'warmed up' to me better. I'm so excited come bedtime each night- there are kisses all round! :) I know what you mean with calling the cries or laughs fake, they are what would be considered fake by anyone else, as they are what sounds/ seems to be alike to when people put it on, if you know what I mean? We dont treat it as fake tho, if he comes looking for a sympathy pat on the back we do! Anyway, we had blood tests a few weeks ago, both boys did great, neither cried! Both were fascinated. Twin 1, they had trouble finding his veins and after two failed attempts they decided to do a finger prick, messy! In the last few weeks I've been worrying about both boys, and I'm not sure if I'm leaning either way on this, just wish the doctors were more helpful! As ive said above i havent discussed this with anyone except hubby, not evwn my mother who lives downstairs, but the other day she made a comment about how smart the boys were at breaking into an out of things, how they cant stay still and about thier temperament, but totally out of conversation or out of caricature for her, she added, some parents would go get a doctor to give them medication and claim extra benefits for children like that! it really hit me like a train to the chest! She had never been that kind of person to make a strange judgement like that, i think it may have come from her new boyfriend after he met the boys. but it hurts! with the knowledge i have of asd now i feel a twinge of pain when peoPle make silly comments about children they know that are different. I will probably get off this site for a while, I don't want to be amongst all you very special people that deal with asd all day everyday, and think that I have the same level of hardship if indeed I don't, I feel that if it turns out that my son/s are 'just' having issues with sensory input output then I'm not qualified to be in with all the amazing people that do so well dealing with much higher needs children. I shall go try to find a sensory page to gain some more understanding in that aspect while I wait for the doctors to get their act together. Who knows, I may indeed be back! All the best!

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...