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At my wits end...

(24 Posts)
Heytheredelilah1987 Thu 02-Feb-17 20:16:50

I'm so sorry for this dreary post but I literally feel I have to share this somewhere in the hope someone will at least understand.

My ds is 2 and undergoing assessment for Autism. I'm honestly at my wits end after this week. He's so destructive In the house. If I take him for walks he can be extremely difficult to walk;so I often just use the pram. He is waking a lot through the night so I'm shattered which doesn't help. He bites constantly (myself and others ) stores food , throws , smashes and hits and kicks- not to mention continously shrieking and whining.

I know all of this behaviour has a root cause and I am working hard to try and help him express himself in different ways : makaton , sensory diet and starting some aba therapy from home next week.

Today we went to a SN group and he just threw stuff and the minute I took my eye off him he had lobbed a car at a girls face and she was screaming, needed an ice compress and I just immediately removed him. I have tried everything going for this throwing... he doesn't learn that it's not acceptable behaviour at the snow group (as the group leader told us today confused) the mum of the girl he hurt was so understanding, but a lady next to her bluntly told me he had lobbed a car right in her face - she's often giving looks when he kicks off - which I'd understand if I was just ignoring him but I follow the lad everywhere and always tell him not to throw or remove him.
I don't know why she's so judgemental as a SN group, surely it's clear he has some additional needs if he's there? I'm aware a kid that's prone to meltdowns etc can be annoying for others- but this is one place I hoped wouldn't judge my son and I.
I've decided not to bring him back as he clearly can't handle big groups and I won't have him subjected to judgey women who should know better... it's a SN group ffs. I already feel like a recluse as we are so limited to where we go and now I feel I can't even take him to sn groups as he can be so volatile. I thoroughly understand its autism and he cannot help the behaviour and he's not bad but that doesn't stop me from getting frustrated at times when he's constantly lashing out etc etc I never see the other kids with asd being as physical as he is which makes me think it's somehow my fault, I'm crap ?? But he doesn't see violence obviously and we are not an aggressive family... he doesn't get disciplined too harshly, but I always try to redirect his behaviour that challenges. I just wish I knew why he had so much anger and can be so aggressive.

I'm so sorry for the essay ; I just feel like I'm doing all I can to try and help him along while we wait for the ridiculously long waiting lists for help available. I feel so helpless and judged and so hurt for my son whom I know is being judged for behaviour that is largely not naughty but actually acting out of frustration/ confusion due to his additional needs. It hurts me so much people see him as a brat or something. He can be so lovely and we do have some good weeks...but on weeks like this I just feel beside myself with the stress and my nerves are constantly frazzled.

Please can someone else out there tell me their dc was like this and grew out of it ? I never see other kids at the groups behave so angrily. It's really getting me down. as I have said he can play so nicely and can be so loving, but the violent side of things is just so difficult to manage as it's understandably very anti social behaviour.

Heytheredelilah1987 Thu 02-Feb-17 20:19:19

Not snow group! SN group sorry

emmajp1225 Thu 02-Feb-17 22:07:11

I have two children with autism, my youngest was like your son, the least bit thing would trigger an outburst. We had to wait for 13 month before he started to see someone with regards to his outbursts, by that time we had actually managed to get him to a stage where he would realise the triggers and take himself off to his special quiet zone. We found communication was the greatest problem, his speech was extremely poor and his makaton was not consistent. After identifying this problem we started to use what they call the PECS symbol system, a book with lots of everyday pictures in, ranging from emotions to food or activities. Noise was also a great trigger in his outbursts so we ended up purchasing some ear defenders. Autism is a complex thing the best way to describe it is like a duck sitting on the water it looks so calm and peaceful yet it's feet are going ten to the dozen underneath the water, there are so many trigger factors. Noise is usually the main one big groups for my son where a no no to much visual and far to much noise. It is a process of ruling out the trigger factors and keeping your child calm. People will always judge, this is because they do not understand what you are going through, it is not your fault, it is theirs for showing ignorance. Try getting in touch with an autistic group in your area even if it is just to pick the brains of other parents , or just to have a chat to offload some of the stress. Biting is an issue still to this day with my son however we do use a chewbuddy, he uses this when he is really frustrated. Hope this helps.

Heytheredelilah1987 Thu 02-Feb-17 22:38:14

Thanks emma for your lovely reply. Has really made me feel less alone in all of this. Something you said about visual stimulation actually really has me thinking ... my son def seems to get overwhelmed by lots of visuals so I think this big group isn't ideal when there are lots of people there as it all is too much. Some weeks hardly any go and he's better then I'd say. I'm def going to leave attending that group.

We have tried ear defenders but my son won't tolerate them. We have a chewy and have tried frozen fruit and all sorts for the biting but the only thing that helps is his blankey ... he will bite that sometimes instead of his arm.

Can I ask how old your son is and does he have a Learning disability? Just because I have heard often the kids who tend to present with behaviour that challenges are also kids with both asd and a ld...

I hope this isn't being too nosey. Thanks x

emmajp1225 Thu 02-Feb-17 22:56:58

My son is 9 years old now, he has severe learning disabilities and is going blind. His autism was really difficult to deal with because it was not what we expected with the condition that he has. We used to describe him as a bubble child, he would be calm and placid when nobody came into his space, just like having a bubble around him, take him out of it and all hell broke loose. After a long process of trial by error we managed to break him away from his little bubble without major outbursts, now he has a quite zone, if he is stressed it's where he takes himself off to be alone with no noise or visual overload. The throwing was an issue with us as well, we over came that by, this may sound strange, going to feed the ducks at the local pond. It gave jj the chance to throw till his hearts content, eventually he only associated throwing with feeding the ducks and it stopped altogether. Things will get better once you start to work out the triggers.

zzzzz Thu 02-Feb-17 23:22:12

A trampoline, swimming and Epsom salts (about a cup full) in his bath. All take the edge off.
A swing (ikea do a sack like one you can curl up in), and you can get a bracket for a doorway.

Check his teeth for cavities.

Heytheredelilah1987 Fri 03-Feb-17 06:35:13

Thanks emma - we do feed the ducks, throw rocks in the sea and I take him for big walks to a local stream where he can throw leaves in the water etc. His fav thing in the whole world is to throw things in the sea / a stream. I'll perhaps do this daily then? May curb it!

Zzzz he is ok a teeth brushing so I doubt cavities but I will look. Would you say that as biting can be a symptom of that? Tbf my ds has bit since he was around 10 months old so I doubt it's cavities. But that's something I hadn't thought of.

I'll def very getting a trampoline and going to order Epsom salts now. Baths always relax him too. Anything water related. I even bought an indoor water fountain - plaything but he just destroyed it - as he did witg his tent and his cars etc etc. What is a bracket for the doorway zzz?
We do practice a sensory diet which helps with the throwing sometimes... but on weeks like this nothing seems to ease his difficulties for him bless him. We have blood tests next week and I'm really worried about fragile x - as I know that can be associated with aggression etc and biting oneself...

zzzzz Fri 03-Feb-17 08:02:56

Cavities aren't particularly bite related but they can cause pain which is really stressful, so it is worth being hyper vigilant if your child can't report.

The brackets are bars that attach to the doorframe and let you hang stuff like swings in the doorway. Body builders use them for pull ups.

Ds loves basketball at that stage. Sponge ball inside one and more robust one outside. It helps with turn taking and getting dh's actively involved too. There's something so "normal" about being able to say "he loves basketball, we play after work EVERY DAY" ( dramatic sigh) grin

If you can find a piece of pipe from the diy shop and use plastic ties to fix it to the stair banisters. He can run up the stairs post a ball/car and run down again. (Get lots of ties then you can snip them off and put it away any time.

The more physically tired ds was the easier he found that stage. It meant he could focus more and it made him happy.

How is his diet? Children under 5 should take vitamin supplements according to Nhs. Wacky children more so, IMO. Ds used to have abidec. Revolting but a very useful skill to be able to take medicine so I worth it in many ways.

As far as his learning goes , have you got an iPad? If so it's a good time to start Montessori intro to numbers wink. Non talkers often have a lot of thinking space that needs harnessing grin

zzzzz Fri 03-Feb-17 08:05:44

Sorry about typos I have a horrible feeling I need reading glasses shock [gibber] < runs away screaming with fingers in ears>

Heytheredelilah1987 Fri 03-Feb-17 14:10:42

Zzz don't apologise about typos! Despite a lit degree , I barely remember to spell my own name these days confused

The pipe idea is epic ! Will do that as he does love car towers etc. His sis has a tablet I could use for number learning? Is it a particular app? You're right re: thinking space needed harnessing... my son is definitely understanding more than he's saying ... I'm hoping aba and makaton will help in this area though too! Sorry for all the questions. Thanks for the support.

Heytheredelilah1987 Fri 03-Feb-17 14:12:12

As for diet - he eats well when he's well in himself. Of unwell he will store food in his mouth and not eat much at all. Thankfully he likes his fruit and veg. I give him lots of iron enriched foods too. He has a multi vitamin and probiotic and fish oil (when I remember!)

zzzzz Fri 03-Feb-17 15:25:49

smile

Choosing apps carefully is very important. Use your cloud so only what you want is available. Avoid ones with prizes, stimmy showers of fireworks and VERY importantly ones that make noises when you get things "wrong".

The Montessorium apps are good. Peaceful enough for winding down and will jump start numbers and letters, KEEZY for buttons to pre-record, Buddy bear apps for language. There's an on-line shop called Absorbent Minds which has lovely but £££ toys, (copy them). Read through the early years curriculum of a Montessori school and get lots of ideas of things to do.

Later when he is communicating better Language Builder and Question Builder.

grin blush sorry....it's my special interest wink

Heytheredelilah1987 Fri 03-Feb-17 18:21:17

Goodness please don't apologise !!! I'm so grateful for any help we can get after this week. This board is wonderful

zzzzz Fri 03-Feb-17 18:34:49

Yes it is so helpful just to talk to people who get it. This board was a bit of a sanity and joy saver for me.

2boysandadog9 Fri 03-Feb-17 18:58:39

I don't have any advice for those behaviours exactly, but I know how you feel.
I take DS to a playgroup - or should I say did take him... not any more. I also feel like since his behaviour became more difficult, aside from shopping and park when it's not raining, DS is home a lot in the winter so wanted to try 'social stuff' for him.

It wasn't a SN group, just the regular stay and play at our local centre. A few weeks ago we went for the first time in ages, when we arrived DS would not come in the door, wanted to open and close it, started wailing, pushing and kicking me... the woman at the entrance looked scared to death!
Once we finally made it inside I knew straight away it was too busy for him, so we went into the garden area - he ran around, threw sand everywhere, repeatedly up and down the slide, ignored me completely.
The other mums were ok with it, but I could see that look of general pity and 'does she know her kid is acting weird'.
It also highlighted massively how different and behind DS is both socially and communication wise. Plus he is very tall for his age and looks like he could be 3 or 4 instead of 2.4!
It's tough sometimes, I have always been very vigilant of keeping my kids from disturbing other people, but with DS2 having SN I am going to have to learn to deal with the annoyed looks sad

Btw, good luck with the blood test. It was kind of ok for us last week, DS couldn't understand what was happening and I struggled to hold him as he has super human strength (Anyone else's DC like that? He is honestly amazingly strong) but it was quick! I am also worried about fragile X, or some other genetic issue. I have spent an inordinate amount of time checking for dysmorphic features (my husband thinks I am crazy!).... only 8 weeks wait sad

Heytheredelilah1987 Fri 03-Feb-17 20:10:35

Zzz I see you on here giving loads of lovely advice to us newbies - it's very much appreciated and doesn't go unnoticed how helpful you are to all flowers

2boys- ah glad to hear you got the bloods out the way. My ds is also huge and looks about 4 (he's in size 4 - 5 clothes in some things!) And also has super human strength. We call him an ox! I hope these 2 months fly by for you. We have our blood test for ds next week so will find out around a similar time if there is anything else going on ... like you I'm really worried about them, particularly fragile x. Dp also thinks I'm nuts, haha.

That scene you described at a local playgroup brought back many memories of ds and I. We too got looks of shock and I do remember two mums staring at ds and talking - it's was when he was playing with the car tower. He wouldn't let any kid near the cars or the tower and just sat rolling the cars down repeatedly again and again. At the time I was aware he was hard to handle; but I didn't know as much about asd as I do now. I always think back to those two women as in hindsight I think they could perhaps see what I couldn't at the time ? In the end we left as he started hitting and he was screaming and biting me. I never went back.

Heytheredelilah1987 Fri 03-Feb-17 20:13:34

Of course knowing what I know now I feel guilt for putting my son in these groups - singing classes too (he HATES anyone singing) but I didn't know what I didn't know and I truly believed I was just being a good mum trying to get him and dd to socialise witg other kiddies ...

emmajp1225 Fri 03-Feb-17 20:38:01

We all make some mistakes, you should not feel guilty at trying new things. Parenting is hard to start off with, however it is ten times harder for parents with special needs kids. What works for some does not always work for others, it is not about what is right or what is wrong it is about the individual child who has different needs to others and finding out what they are. Do a tick list for what works and what does not, that way you can keep track of what you have tried. Every child is different, I have three with complex special needs and they are all different. You are not alone in all of this we have and still are going through this all of us.

2boysandadog9 Fri 03-Feb-17 20:57:47

Up until very recently I kept doing activities as if nothing was different, like if I did all the usual kiddy stuff with DS he would realise how fun it was and magically change... now I have tuned into reality FM grin I do feel a bit guilty, but I know I was only trying my best - however misguided!

I guess we have to try and understand the best way to help our kids learn and have fun, while minimising stress and relieving sensory needs.
Each child is so different, but this board has taught me so much and been a huge support during the TOUGHEST 6 months of my life. I feel like I have a place to come and get better advice and support than any professional could give. flowers

Heytheredelilah1987 Fri 03-Feb-17 21:26:00

Thanks Emma , it's so lovely to hear "you're not alone" at such an isolating period in my lifesmile and you're right , all kids are individuals- the tick box is a good idea!

2boys- I also agree the advice on here is second to none. Such a lovely and supportive community. I did have a good chuckle at 'tuning into reality fm' hahaha! Will have to steal that one ;)

2boysandadog9 Fri 03-Feb-17 22:36:29

I stole it from someone else here! blush
It was too good!!!

Heytheredelilah1987 Sat 04-Feb-17 06:37:23

grin

Msqueen33 Sun 05-Feb-17 19:32:28

We didn't really fit at Sen groups. Both my two have autism and ADHD and people either thought there was nothing wrong with them when they were screaming under tables or refusing to sing. I'm not sure what caused me most stress. We ended up avoiding all groups and going out on our own to places outside. It was hard as I felt guilty and lonely.

Heytheredelilah1987 Sun 05-Feb-17 19:52:28

Ms queen- thus is exactly my situation. I find life much easier for my boy and I when we just go for walks with the dog or visit queit parks, but as you say it can be very lonely and I worry my friends think I'm anti social

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