Please note that threads in this topic are removed from the archive 90 days after the thread was started. If you would like your thread to be retrievable for longer than that, please choose another topic in which to post it. Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here.
How do I help my child?(17 Posts)
I'm so new to all of this and am not even sure what I'm dealing with, how to react, how to help...basically I'm lost and need guidance.
My child is nearly 9. Has always been happy, outgoing, getting along with others, kind, compassionate. Also loud, boisterous, easily excitable, a bit lax in understanding personal boundaries...basically as a toddler I was always the one who came away from playdates having been the mother who had had to intervene constantly for the noise and over-enthusiastic frivolity.
My child's problems started in school. In year 1 it was highlighted that there were some "difficulties" going on - children were getting injured by "hitting" incidents that the teachers stated to me were obviously not intentional or malicious but obviously he was upsetting the other children in his class. Went to the Dr as advised and were told nothing was wrong except for our home life being so bloody awful at the time.
School were very good and got the Ed Psyche in and they implemented a "traffic light" system for him which seemed to go very well and when he left their he was described as their "star pupil" top of the class in maths and a lovely child to be around. They were extremely concerned though as the school was very small, only 6 in the class, and they felt this would all go to pot in junior school with a class of 30.
Sure enough, everything went to pot.
My child got 2 detentions within the 1st 6 weeks, one for playing "tag" and hitting a girl on the back "your it" and leaving a mark. My LO didn't understand what they had done wrong but you can imagine the scene and as far as the children involved were concerned it had been an intentional act of violence. I didn't make too much of a fuss, wanted to try to fit in to the school and LO did and does need to learn to not get so excited - the intention wasn't to hurt but the end result was the same as if intention had been there.
I learned over the summer holidays that LO has been bullied every single day at school, is often left out of things. I witnessed something in assembly that made me feel a little uneasy (during singing LO was swaying to the music and slightly knocking into a girl who was then giving dirty looks and elbowing LO - LO just kept looking back at the girl with a look of bewilderment)
I have been into the head who has tried to put a stop to the bullying. I don't think it has stopped. LO still says he doesn't think people really like him and that they look at him like "crap". A "friend" of his has said that he wants to be friends but he has to stop being "weird" - some friend. This friend had him to his birthday party yesterday. I was asked to come along by the mum who I'm pretty good friends with because said "friend" was worried LO would ruin the party - LO is getting more and more sensitive and reactive lately to how he thinks others are precieving him and some of the children who have been bullying LO were goignt o be there. I went along and it's no wonder LO is getting more and more sensitive! Before the party had even started he was upset because one of the boys had told him he thought my 17 week old baby was fat - LO in his usual way found that hugely offensive and came running up to me making a scene with the other boy on tow getting upset saying he had said the wrong word and I had to get LO to pipe down and tell him not to ruin the party when actually I'm pretty sure what happened was that the boy was baiting LO because I've seen it happen before. He was bossed about, told to shut up because he was being loud even though others were being loud, his name was shouted out constantly by the children because he was annoying them and yet as I was watching he wasn't doing anything that much different than others. It was one of those make your own pop video parties and in the warm up LO did hog the camera a bit so I had a word to try to help calm things but just moments later the "friend" whos birthday it was had hold of his aarm and was talking in his ear and LO's face turned red and he hung his head and moved to the side and started crying. In all fairness to him he pulled himself together quickly and joined back in (I later found out that "friend" had told him to "behave" or he was going to kick LO out of the party - at that point LO wasn't hogging the camera anymore and was acting pretty much like everyone else, but the "coaching" by "friend" carried on. They did piggy backs and LO held one of the boys around the neck - next thing I know I'm getting chapter and verse about how LO has "strangled" one of the boys....this is something that happens often - I feel he is made a scape goat. Bascially, they treated him like the village idiot for most of the party and at one point LO was in the corner and my friend went in and talked to him and he said they were all calling him names (I didn't hear any name calling but at this point LO was feeling so bad about himself that he may have being imagining it) I wanted to leave but couldn't' because we had given another boy a lift, the only child there to not treat LO like a PITA.
We are supposed to be going on holiday with this "friend" soon and I don't know how to approach this at all. I've told LO that if his "friend" makes him feel like crap then he doesn't have to be friends with him, that he deserves better than to be treated like that, but LO says, as usual, I'll just give him one more chance - in my mind LO is desperate to be accepted. I've thought about talking to mum because she feels for LO and has tried to talk to her son about being more accepting and tolerant but to be honest I've never been good at approaching people about difficult situations - no matter how hard I try I just end up pissing people off and come away from the conversation the bad guy somehow.
At cub camp recently he was punched for touching a boy on the back and then told the other cubs within ear shot to just punch LO if - it wasn't seen by any one unfortunately and the boy who did it came straight home and told his mother LO attacked him so he punched him and so that's perfectly fine and the encouraging others to punch didn't happen because her boy wouldn't' do that. This boy wouldn't leave LO alone last week at cubs and LO ended up lashing out....cubs are trying to help as they can see that he is struggling but they are at a loss but also feel that he needs cubs and so are just trying to keep him and this boy apart
I often feel like I am walking a fine line between trying to control LO and letting him be who he is. He is hard work, has gotten harder since starting at this school in Sept 2012.
The school, even though they had a letter from the previous school expressing their concerns with LO's social development, are adamant they feel there is nothing wrong. I tool matters into my own hands a few months back and LO is now awaiting OT and SALT - ADHD and sensory processing issues have been mentioned to me but the community paediatrician doesn't want to "label" lo as she doesn't feel that would be helpful.
I'm lost. I'm frustrated. I'm sad. I feel I have helped to contribute to LO's state of mind because I've struggled at home and treated LO at times in exactly the same way I saw his friends treat him yesterday.
I have a meeting in school next week with his new year teacher - and I want to highlight these issues but I feel I will be just brushed off. I also want to bring up the fact that last year his teacher would often patronise and poo-hoo LO when he would get upset over something - yes, he IS pedantic, and it has gotten worse the longer this lack of peer acceptance, but if the children were witness this teacher behaving like this then no wonder they are treating him like he's daft too and something to be tolerated.
I've been in to see the head about him being identified with additional needs and I get raised eyebrows and surprised "but he's doing so well" comments (according to the report they sent to the community paed. he's just about scraping past the SEN level - and I'm not being precious when I say he's smarter than that) and although I've brought in the letters written by the paed after her second assessment of LO I don't' think they're really taking anything into account. LO tells me he's seen the school counsellor a few times and he does Ready TO Learn in the mornings.
Where do I start with all of this? That's a very long post, I'm not very good at being succinct - maybe that's his problem, he has a mum who doesn't communicate very well.
Also, some of his oddities...in case that helps with any advice
Easily gets in peoples faces - like an inch away- when overexcited, squealing and laughing etc and then deosnt' understand when child reacts.
He has to be told again and again and again when in an excitable situation - and usually ends up being shouted at
Doesn't handle negative emotions very well, whines, frowns, funs away.
Doesn't handle pain well - really over-reacts, squealing and if you try to help gets aggressive and shouting No! and yet at other times he can fall and then say straight away it's okay, I'm ok and wants to foget the incident as quickly as possible
Often puts on a laugh that sounds completely out of sync with what is going on around him - though doesn't laugh at obviously inappropriate times often, just occasionally - the rest of the time it more of an over the top laugh to a situation that is mildly funny
When excited he rubs his hands together between his legs and bounces.
Sometimes also flaps hands
Has to be right about everything
Repeats words over and over and over until told that we heard him the first time.
Once is never enough to say something when he's excited
Pedantic isn't the word - it's like pulling teeth!!!
Often is very literal and doesn't understand subtleties
Terrible sense of time - hard to get ready for school etc. but tries very hard.
Cannot have a conversation without interrupting, cant speak on the phone with someone without him interrupting.
Follows me about a lot
Obsessive at times - especially video games
Outbursts are very occasional but when they do happen they are explosive
Very very sensitive
Will often "mother" other kids even though he is told it's not for him to tell them what to do - and yet the very same thing he will have pulled someone up on he will do himself.
Struggles with comprehension type work - but has been told by his teacher that's his fault and he just needs to put the work in because he has managed to complete the work sometimes.
Please get rid of the 'failing' bit of your name, because you're not, it sounds like you've been trying bloody hard to get someone to take your ds's difficulties seriously. Do give yourself a break, we all know how exhaustingly relentless it all is.
Well, back to practicals. A lot of what you write rings bells for me, my ds is 10 and has diagnoses of Aspergers and sensory processing disorder. Have you read about these? My first bit of advice would be read stuff, make notes as you go, and keep a diary. This will all help you answer questions and also start to see patterns in behaviours.
A couple of books I think you might find helpful right now are 'The Explosive Child' which might help you develop your ways of dealing with ds and make life a bit easier for you, the other is 'Too Loud Too Bright Too Fast Too Tight' which is about sensory difficulties, and especially sensory defensiveness, I think it might help you with some practical techniques.
Is your ds getting any support at school at all?
And I do apologise for spelling your NN wrong
Goose (If I call you that can I be caller Maverick? )
SPD has been mentioned by OT. We've not seen them yet but were sent a letter where I had to pick out of 4 descriptions which best fit my LO. I picked the one that flags SPDs but he had strong things in 2 and 3...I can write them down on here if that's any help to anyone. Anyway...this put us in the parent training group and I had to call back and fight for them to actualy see him because the consultant actually wanted a Gross and Fine motor assessment on him due to intermittent tip-toeing, overflow movements and issues with laterality (sp?)...I got the appointment and have been told at that one he will probably be picked up for SPD issues too.
As for Aspergers - I have wondered...he has a friend who he gets along famously with and he has had a recent DX of ADHD and Aspergers and they get along famously but explosively IYSWIM?
But dyspraxia also fits. I don't know, it's all very confusing. I'm not sure what I'm going to say to the teacher this week to be honest...I find it hard figuring out what is normal and what is not, partly because I'm trying hard not to project I think because I had a difficult home and school life from 11+ - in fact my mother and I have just fallen out over this because she feels I should not be involving him in the diagnosis because it's encouraging him to behave badly and he never plays up when she has him....and partly because I'm not very good at fighting my corner, I always worry I'm over-reacting or being unreasonable....second-guessing myself is a hobby.
There are huge overlaps between the various neuro/developmental conditions and a lot of kids of people who post on here have more multiple diagnoses, my ds also has joint hypermobility which affects his sensory processing and motor skills. So whilst his primary dx is the Aspergers he so shares many 'features' with kids with dyspraxia, dyslexia, ADHD, maybe bits of Tourette's and OCD. It's like a Venn diagram I think.
Ask the OTs to do a 'sensory profile' so at least you know what the issues are, also ask if they run the Alert programme, my ds did it earlier this year and it was excellent.
I also have mother issues, my life is considerably improved for having no contact...
NC...funny you should say that...she kicked me out of her life when I tried to protest at her opinions on how I should be dealing with this and she accused me of lecturing her and then demanded to know what I thought of my childhood...she didn't like my answer!
How do you want to deal with this? Is it just you and ds?
I find enormous strength on these SN boards and have been a much better advocate for my ds since becoming more active on here. It's really quite powerful, especially as having a child with disabilities is very often very isolating.
Earlier this year I felt everything was falling apart, ds was close to school refusal, so I wrote to the professionals I needed involved telling them we were reaching crisis point and that we needed interaction urgently. I think you need to do something similar. Work out a list of ds's difficulties, maybe use headings like Social, Communication, Behaviour, Motor Skills, Sensory, etc. and provide some examples for each set of difficulties. Explain how these impact on his learning, behaviour, anxiety, development. The send copies to your GP, the paed and OT. Ask for urgent assessment.
Are you in England/Wales? If so he should be on school action plus and have an IEP.
Fortunately I'm not alone either at home or here at MN! I'm in England but he is not on any action or IEP despite me going in to the head and her having copies of the letters resulting from the community paediatrician assessment and follow up earlier this year.
Also, he didn't want to go back to school this September and we came close to writing a deregistration letter but changed our minds since we also have a baby and still finding our new "normal". He says he wants to leave come Christmas...wants to move to a new school or be homeschooled and while he will continue on if I say to him I need more time I know he won't be happy to continue but I have also explained that kids are kids in all schools and that this isn't just going to disappear. Should I even really be discussing this with him? I try to help him come up with strategies to problems he encounters to help him and since he's been at the meetings with the community paediatrician I've talked with him about what might be going on...but is that the right thing to do or is my mother right that I'm encouraging him to play on it?
Well, I think you should read the SEN Code of Practice so you know what ds's legal rights are in terms of school support. I think you should consider applying for statutory assessment, IPSEA have model letters.
I've always been totally open with ds, since before his dx at 6yo. It's worked for us, it helps because there's good books for kids with Aspergers. The worst moment was when we were about to see OT and I explained how they might be able to help with whatever the difficulties were at the time and he replied 'but I don't want to change because then I won't be me' but on the whole it has helped ds a lot to know there are reasons why he is different and why he finds some stuff really hard and other stuff really easy, recently telling me he likes having Aspergers because he likes having obsessions TBH as far as ds is concerned he is absolutely perfect and the rest of the population are
annoying cunts weird.
Thank you so much for those links, Goose. I have them pinned to my front page.
Tonight's meeting with his teacher went well...but I am miffed at the head because she didnt' take any of our meeting to his teacher to highlight the problems. However, his teacher took everything on board that I said, agreed with most of what I said and was intent on trying ot help him as best she can: I didn't get what I have become used to which is brushing off and excuses. I think I like this one and hope we decelop a great working relationship.
On another note...a hitting incident at a friend's house today....the "friend" who's birthday was mentioned above. He hit said friend. He's in trouble. And he's tried to be extremely grown up about it after the fact. I feel I set him up for failure - 6 kids all together in a small house...but he so wanted to go. I feel it's my fault thought because said friend has been winding him up with the small slights. Poor judgement on my side. I'm sad again.
Don't beat yourself up about it, we are all learning all the time
Lovely to have a receptive teacher, hope it works out <fingers crossed>
I've got another recommendation to give you, Dawn Huebner's What to do when your temper flares which is a short CBT programme workbook you can do with ds at home. I've used that one and also her worries one and will be doing her grumbling/negativity one next. They're very good.
Your DC sounds very like my DS who was diagnosed with ADHD and Apergers last week.
It worth pushing for some assessments to get some clarity and hopefully more help.
Donr bwe too hard on yourself. its hard to get it right and its a constant learninig curve.
My Ds is always wanting to go to the parties and the school disco and social events even though he spends half the time in tears due to being bumped into/the noise/the hustle and bustle being too much or being in trouble after being too 'in your face' with people and misreading situations and becomeing defensive or just being too boisterous.
He goes, but we have an exit strategy, plan what we will do if things dont go smoothly. Its just something we started to do so DS could join in with his peers, but recognising maybe he wont stay the full 2 hours at the disco/socail gathering/playdate etc.
These rubbish things happen, hindsight is an amazing thing , but we learn as we go. Everyone has a few face palm moments when we realise we should have known better to put DC in that situation , and other times its a pleasant surprise when things go extremely well (and they will).
Goose - re statutory assessment...am I right in thinking that is where get gets to see the Ed Psych? Because HTML told me at the beginning if term that Id bypassed that because Id managed to get a GP referral to a community pediatrician (and alsothey are only allowed 4 ed Psych appointments a year for the school so it would be pointless asking anyway as he's 'doing fine' - bearing in mind this cones from the person who dismissed my concerns out of had when I suggested ADHD because my child is able to sit in a chair).
Treacle - what did you need to do to get an ASD assessment? We see our community pediatrician next month and want to push for this.
We asked GP for a referral to a Dev Paed. We had a report from the behaviour support team and Educational psychologist who had observed DS in school with their recomendations for assessment, but if you list your conserns(video the behaviour you feel is unusual/out of step with peers if you can) that should be adequate for an initial referral.
The Paed agreed ASD with possible sensory processing disorder which could explain the high activity and distractability rather than ADHD. We got bounced to CAMHS who do the assessment and diagnosis of ASD and ADHD in our area.
CAMHS was a 6 month wait, but we got a very swift diagnosis which is very unusual(text book case for both conditions apparently). They attempted an ADOS ledplay assessment but DS was not playing ball (well that's all he would do actually). We also completed a Connors assessment questionaire which is used to identify ADHD traits which DS scored high on.
Still waiting for the OT assessment for sensory processing issues. Its a long wait to get things going so the sooner you ask the better.
Dont be fobbed off by thye GP. When we went to ask for referral our GP stated she felt it very unlikely DS had ADHD as he was not hyper enough and was definately not autistic as he was too sociable ...but as other experts had suggested assessment she went along with it...you have to be tenacious and consistent with your requests no matter what evidence you have.
In the end, if you have conserns, you take them to your GP and ask for assessment. Making no assumptions, just provide the facts (as you listed above). Developmental Paed is what you need.
Many SN children do 'pretty well' (do they mean academically?) in the school environment but would do exceptionally well with the right support. If school dont see it and dont want to investigate, then you need to get the ball rolling yourself, and if you get a diagnosis it may help the school 'see' the issues.
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.