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Just at the very start if the road, hand holding and words of wisdom needed!

(13 Posts)
roadkillbunny Mon 29-Oct-12 23:34:05

Hi to all, have been wanting to post for a while but struggling to know where to start there is just so much stuff I could be writing for a week about ds in efforts to give all information and as it stands right now I am not all to sure what is important and what isn't but I really could do with some been there, done that, got the t-shirt and lunch box advice so have plucked up the courage to have a go.
Ds is 4.5 and started school in September. He has significant speech and language delay and problems with glue ear in past. I knew school was going to bring issues but even though I have long had the feeling that ds has more going on then what I have just said I either hadn't realised or was suffering a bit of the old denials about how many problems my lovely boy has.
Over the last couple of weeks it has really kicked off, ds is having many issues in school the one that needs the swiftest action being his use of violence (not going to say aggression as there is nothing aggressive about it). By posting here I know that everybody understands that i know the behaviour is unacceptable and I know it is wrong for the other children to have to put up with it and while I am not making excuses for his behaviour ds does have his reasons and he is not doing this to be nasty or naughty, quite the opposite, he is hurting the children he likes and wants to be friendly with.
Ds has been at Pre school since 2.9 years old and I also have a 7.5 year old dd yet ds presents as an only who has been at home his whole life with no social activities. He has never had friends but in the past this has no bothered him, he was happy as he was but now he actually wants friends and doesn't have the first clue.
I have had him back at audiology and he is not hearing to well on one side again but they have confirmed that his speech and language problems would not be caused by this and have told us to see GP for referrals to be made, exactly what I was hoping as I knew his hearing issues are not the cause, he sees GP this Wednesday. He is already under SaLT but trying to get them to do anything is a nightmare, school are now also putting a rocket to them in effort to get him proper input from them, last time we saw then they just said his language needed to mature before they could work with him but problem is his speech isn't maturing!! He has the speech if a just about 2 year old. He lacks many simple nouns, will parrot the word back at you then not know a minute later, a three word 'sentence' is the best you get although his comprehension isn't too bad, far more age appropriate.

As I say there is so much more, he is a lovely boy though who gives lots of love, he is bright, can read more then he can say although most of his reading is by memorising as he wants you to read absolutely everything he sees to him, he is very good with numbers and out of this world with computers, he would be on some tech gadget 24/7 if you let him.

I have come to reslise that I still feel like I am parenting a 2 to 3 year old toddler and I am exhorted, I am disabled myself and haven't had a great year and now things are starting to really move with ds I just feel worn out and I know this is just the start!

It is a little early on this road to be hoping for diagnosis from his proffetionals and I am sure we will have a long wait for new referrals however that little voice in the back of my head that mutters in the dark and I am only just allowing proper voice to has felt since he was about 18 months that is needs are more complex then hearing issues and speech delay and that he us probably on the high functioning end of the spectrum. I don't want to get bogged down with speculation but have been reading allot on ASD as the advice on methods to help ds with his current problems is good, I thought I was quite clued up but I am still learning loads, same is true for the path we are now on.

I guess I am looking for some hand holding, advice and opinion but most of all just to hear from people who are going through it all to or are further down the line.
I wouldn't change my beautiful happy boy for the world, all this makes him who he is, how could I wish it away but I do wish the world were a slightly easier place fir him, that now he wants a friend he could have one (although the children in his class are all very nice and don't seem to be holding being clouted with slippers or s cached on the face against him... It's the mums I worry about!), I just wish it all wasn't so hard for us all, some days I could just cry forever for him but then I see his happy smile and you can't help but smile to.
Thank you for reading, do ask if I haven't explained something well or missed out something important, I have missed out tons of stuff about him as, well I could write a book of ds!

(I am sorry for bad typing, spelling, typos, I can't feel my fingers much and my eye sight is very poor, not a great combo, I do hope I can be understood!)

EllenJaneisstillnotmyname Tue 30-Oct-12 00:15:54

Hi roadkill, welcome to the board. smile. You sound as if you are getting through any 'denial' you may have had. TBH, it's easy to miss things if speech is delayed and at home it's amazing how easy it is to build coping strategies into your routine. It's often only when DC start school that the difference between them and their peers really shows up. So don't waste any energy on looking back.

So at your GP appointment have a written list of all your concerns and don't leave without a referral to a developmental paed. Don't let the GP fob you off. They are general practitioners, not specialists and may have less idea than you about the autistic spectrum or other developmental issues.

What are school doing? Have they suggested getting an educational psychologist to see him? Have you thought about getting Statutory Assessment kicked off? There is some info on the process on the 'useful mum's net stuff' links on the right of the page. It's late now, but hopefully others will be along later or tomorrow.

coff33pot Tue 30-Oct-12 00:23:25

Hi its late and I am off to bed but didnt want to see you left unanswered.

I suspect you will have more replies tomorrow smile

We are good at holding hands here. HUGE big circle are we smile

The way to go forward is that you now know there are more issues to be delved into for your DS.

GP visit soon request an appointment to a developmental peadiatrician.

In the mean time start making diaries of any issues or things you consider different. Ask school to provide you with a home/school book and tell them it is needed to help the proffessionals try to understand your DS better.

As far as school is concerned. It is great that they are chasing up the SALT for you. But your DS clearly has social understanding/communication issues that he needs a helping hand with to help him form good relationships with his peers and how to maintain them.

School also have a responsibility to protect your DS from causing harm and to protect his peers also.

I would ask for a meeting to discuss that the violence and social awareness is concerning you and do school have anything lined up to help him.

Some suggestions would be a circle of friends, social games with peers and an adult being a role model in how to act, what to say in certain situations.

Has he got a chill out corner if things get stressy for him or is he normally placid and happy in the classroom and its just the hitting that is an issue?

More people will be back with some more ideas I expect, but the main thing is well done you are on the road to sorting this out. Stick with it as it can be a long one but there is a lot you can do and try to put into place in the meantime while you wait smile

roadkillbunny Tue 30-Oct-12 00:57:39

Thank you so much for the swift responses, I am just off to my bed to so will answer I full properly tomorrow but just quickly to say our school is amazing, they are kicking SaLT because ds, me and they need help now, when school contacted them they fired off an appointment for late next month, not happy with that and school won't rest. We are working well together to urgently find the patrons and correct management for ds's violence issues while also doing what we can for his social issues while we try and get proper SaLT input. Pretty much all the strategy a mentioned are already being put in place, only thing we don't have is a home school book, I asked about it as I am taking up alot of teacher time before and after school but for now they are happier doing it this way as we are able to come up with ideas and action things imidiatly although if what we are trying fails we will look at it again, or off it is recommended for keeping the non daily proffetionals in the loop. Had more school meeting then I care to think about, we managed 4 meetings in 5 school days the other week!
Not antis impacting issues with GP, he is good but have already started my written points just in case and to ensure I cover everything.
Thanks for replays, will be back in the miring, suffering with the simple need to just talk about it all, helps me process!

Delalakis Tue 30-Oct-12 10:05:08

It sounds like a complex problem but I wouldn't necessarily wholly accept what the audiology people say about his hearing not contributing to his language problems. At that age it can have a significant effect. Dr Lindsay Peer (an educational psychologist) has written some interesting stuff on this.

roadkillbunny Tue 30-Oct-12 11:51:55

Thank you!
I am not ruling out anything yet, it seems like far too early days todo this. With audiology at the appointment last week they were just looking at the mechanics of his hearing. He had bilateral glue ear from we think, about 2 years old until it began self resolving at 3. By the time he first saw audiology 15 months ago he was self resolving and this was apparent in his speech development and behaviour, he went from being pretty much non verbal to being able to link two words together and much if his difficult frustration based behaviour at Pre school improved. I felt his hearing dropped again in August as his extreme sensitivity to certain noises of certain volume and piches disappeared almost overnight and then school also felt he wasn't hearing well at times. Sure enough when tested last week his hearing was down in his left side due to glue ear but ut is already in resolving state. he only barely passed the toy test and struggled to hear/understand lower volumes with the mouth covered exept with 'key' and 'tree', he did fine with those. Audiology are however far from ruling out an audio processing dificulty however first point of call they tell me is the GP for developmental paediatrician referral and that makes sense to me.
Ds socially is okay one on one and okay with younger and older children it is most apparent how much he struggles when you have more then one peer. I have noticed that ds seems to have no real concept of personal space, he gets very in people's faces, gives hugs but can't see when it is unwanted or how long is appropriate to hold a hug for. I try and explain to him and get him to ask before giving such physical contact but he just doesn't seem to 'get it'.
With the hitting/scratching (fingers crossed we haven't had biting in over a year) it can sometimes be borne of frustration but lately most seems, to us the outsider to his mind, unprovoked for example he scratched a little boys face at carpet time, we think ds was upset because the little boy sat in the place ds likes to sit and ds wanted to get the other boys attention. Another time (a couple of days later) ds hit a different boy with his slippers when they were changing shoes to go out to play after lunch, the other boy was in the line and ds just clobbered him, it seemed like ds wanted to join in with the boys but went for the violence as he didn't know how to get what he wanted. An example of (in ds's eyes!) a prevailed attack was at tidy up time, ds started to climb onto a play table and another boy (different one again, there are only 8 other boys in his class, at least ds is not targeting just one!) told him he isn't allowed to do that, ds's response was to hit him.
Yes we have all noticed the pattern in the above examples, ds struggles with transition times. Mornings are on the whole good, lunch play is often the start of the days problems and end of the day is when the flash point often arrives, things have really heated up over the last few weeks of the half term so tiredness is defiantly a feature although he is a great sleeper and sleeps for almost 12 hours most nights it's almost a mental tiredness I think, the effort if holding everything together and trying so hard can just fall apart.
Thinking I have probably written enough for now, may come back later and talk about some if the other parts of ds as I am finding writing this out is helping me get things streight and as clear and concise as possible in my head ready for the GP appointment tomorrow. Any advice on how to do this, get so much information across to the GP would be hugely apriciated. I don't think I will have any issues with GP and getting referral I like and trust our GP and he did as I asked when sorting SaLT referral as he said it was standard that SaLT would sort any hearing tests or ENT involvement he may need but after SaLT let my dd down massively and I had to take very unusual and drastic action to get her the help she needed I knew that I wanted a separate audiology referral, he did so no problems when I explained my reasons. It does do to be prepared though!
One more question, I know referral times vary between areas and waiting times for new referrals will be long but on aba rage, how long do you think we will wait for a developmental paediatrician appointment?
Thank you so much for being here x

Firsttimer7259 Tue 30-Oct-12 13:05:30

Hi Roadkill. I haven't really got any specific advice - sounds like you are getting on top of things.
There is a hand holding thread thats quite active here http://www.mumsnet.com/Talk/special_needs/1216322-Is-anyone-else-starting-out-on-the-road-to-a-diagnosis-Fancy-holding-hands-on-the-bumpy-path
so come along and join us if that looks like a good place to you.
I know its hard when your child is violent towards others (or just in their face without noticing) esp when you know they dont really understand this yet but can do some damage. I fret over my girl hurting someone and the fall out when other parents will be understandably angry and upset. Good that your school is on the ball.
Our initial pead referral took about 4 months (at 14 months of age) and with some miscommunication about the referral process and christmas adding to that time. But it seems to vary between health boards as far as I can tell.

Firsttimer7259 Tue 30-Oct-12 13:05:48

Hi Roadkill. I haven't really got any specific advice - sounds like you are getting on top of things.
There is a hand holding thread thats quite active here www.mumsnet.com/Talk/special_needs/1216322-Is-anyone-else-starting-out-on-the-road-to-a-diagnosis-Fancy-holding-hands-on-the-bumpy-path
so come along and join us if that looks like a good place to you.
I know its hard when your child is violent towards others (or just in their face without noticing) esp when you know they dont really understand this yet but can do some damage. I fret over my girl hurting someone and the fall out when other parents will be understandably angry and upset. Good that your school is on the ball.
Our initial pead referral took about 4 months (at 14 months of age) and with some miscommunication about the referral process and christmas adding to that time. But it seems to vary between health boards as far as I can tell.

Handywoman Tue 30-Oct-12 13:07:06

Hi roadkill and welcome smile

In answer to your question about waiting times for developmental paed. Seems to vary from about 6months to 2 years depending on where you are. I wonder if it's worth contacting your school nurse, they are potentially more used to dealing with these issues and can also refer to developmental paed (in our area, anyway). School nurse may also know how long the wait is.

I had a dd who at age 4 had the receptive/expressive language of 18month/2 year old. Poor language skills can have a massive effect on social skills at this age and her behaviour was odd and sometimes extreme (tantrums). My dd also had bilateral perforated eardrums following an ear infection at the same time. This complicated things a little, so much attention was paid to the pure audiology aspect, when actually it was a whole set of 'vulnerabilities' coming together. My dd ended up having a hearing aid despite having -40dB (borderline moderate) hearing loss - she needed the extra 'input' to help her attend to speech and develop her language skills. In the meantime she had private speech and language therapy to make maximum use of the hearing that she did have. This included making expectations very clear about how to behave when you are listening (ie look at the person speaking and put your hands in your lap) etc. etc. My experience of NHS SaLT is pretty poor, I would say for this sort of problem intensive help may be necessary and a word of warning: this may not be available on the NHS. If you can consider private SaLT this may be worth it's weight in gold. My dd made 18months-2years of language development in 9 months. This would never have happened with the 4 (yes 4) 30min sessions we were offered on the NHS.

Well this was how it was here. Consider your hand well and truly held and keep us posted. Sounds like your ds's school are amazing btw! That's a big plus.

Handywoman x

Handywoman Tue 30-Oct-12 13:12:55

I would also add that 3.5 years down the line we are still making this journey – my dd's language skills are now normal/above average (massive, massive success) apart from her non-literal language, dire conversational skills and complete inability to comprehend the intentions of others or modify her behaviour to the social situation. We have been under the developmental Paed before and are back there again!!!!! Now waiting for formal assessment for ASD! Hence I am here having my own hand held still! So these issues can take literally years to unfold! You've taken the first step and that's great.

Handywoman x

roadkillbunny Tue 30-Oct-12 16:42:17

Thank you so much for the hand holding, it is very much felt and apriciated, I will check that other thread out when I have a chance to sit and read through, might take a while as I can only manage short burst of screen time with my eyes but I will get there promise (see now I have to lol!)

Gosh I hope we don't face a 2 year wait, months I was expecting, years no way!
I will ask tomorrow about wait list times and if they make me feel faint I will ask schools help to drive it forward, do you know if its worth punching school for an educational phycologist referral while developmental paediatrician referral is pending?
I always knew how good our school is, it's an outstanding school that truly is outstanding, small village school, 25 in each year group (although as we now have a classroom per year group I can see the pressure to go to 30 is going to pile on sadly) they get very high results but no child ever falls through the cracks, they are fast to identify any barrier to learning and always go above and beyond to ensure appropriate support. I knew ds was going to have problems and I think I would have been massively strung out with stress and worry about it if it wasn't such a good school that talk the talk and walk the walk! I just wish every school could be the same, it's heart breaking and shocking to read how other schools are letting down such vulnerable children and failing to provide provision they are legally required to provide!
In one of my meetings with ds's teacher a couple of weeks ago I stressed to her that for ds, reading and writing could wait and he needed help to manage his behaviour and learn how to be part if a social group as a priority. His lovely (massively expireanced and hugely in demand to deliver training to other early years teachers) teacher just smiled at me and said 'I think we can manage both'. I think that conversation just says so much about the lively ethos of the school.

roadkillbunny Wed 31-Oct-12 10:57:07

So we have been to see the GP and I am kind of happy, could be better could be worse situation I think.

GP is going to refere to community paediatrician rather then anything more specialised at this time, better then a kick in the teeth but just have this feeling it could delay getting ds the support he needs if he ends up needing to be referred on, I guess we can but wait and see. Good news is that on asking about waiting times and saying that I understood it could be months the GP reassured me that for peads it's not so bad and we are talking weeks not months, I hope that does end up being the case.

I found it very difficult to try and explain 4.5 years of ds in a 10 minuet appointment and I feel maybe I failed to really get things across, I stressed heavily that school were having problems and were concerned and in need of more specialist help and advice and we were working in trying to get SaLT properly involved.
The GP asked if I could get school to write a report for him to read and send onto the pead outlining their observations and concerns. I think this is really positive and I know school will provide a really good and honest picture of ds and his difficulties, it will delay the referral going in for a couple of weeks as I can't even ask school until we go back next Monday.

I was thinking given I don't feel I was all that successful at getting a full picture of ds and his developmental history across verbally to the GP that I might write my own report to send along side the school one. Would this be a rediculous thing to do? Will they think I am a pushy loon just looking for problems with my child? I am also worried that they may feel I have self diagnosed my ds and be hellbent on an ASD diagnosis, I know I feel this is most likely but I do also understand that I am not a trained proffetional and lots of things can cross over with ASD. How do I show them that my mind isn't closed and I understand that it is too early to discount anything including that ds is simply a slow developer with hearing issues complicating the mix?
Thanks for reading x

EllenJaneisstillnotmyname Wed 31-Oct-12 21:43:57

A written list is much better than a poorly remembered verbal one! If you have a specific DX in mind eg, ASD or SPD or ADD etc, maybe have a look at a list of red flags and put a real life example against every one that applies.

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