Assessment Date Came Through.
Posted 11 April 2016 - 04:32 PM
Well my sons assessment date came through , it is in two weeks time at my local hospital .... With a speciality community paediatrician.
Now it's here I'm not really sure how I feel, a little emotional I guess.
Although we were only referred for assessment last year, I have been dealing with my sons anxieties since he was three.
I'm just feeling so unsure now with the school looking at DCD as the reason for his behaviour it may be that there is no real dx to look at.
I don't know what will happen, would this just be the initial assessment, with several other appointments with various other professionals or will she assess him there and then?
The letter states that we were referred to her for assessment but that is all.
we live in Scotland and I'm aware that this may mean different routes off assessment from what some of you may have undertook.
Also what do you advise that I tell him, my boy is 7 years old and suffers anxiety over change, new situations etc, thought I would tell him the night before and explain that we are going to see a dr about his worries? What do you guys think?
It's so strange you play the waiting game and prepare to fight for your child but once it's here the panic sets in.
Any advice would be appreciated, my heads a bit all over the place x
Posted 11 April 2016 - 08:11 PM
It varies so much from place to place that it's almost impossible to say how it will happen.
I know that way back in the dark ages (14 years ago) when our son was 2, he was referred by Speech and Language to a community paed, who diagnosed him on the spot. We were lent a book on autism and sent on our merry way. I know others here have found the path to diagnosis much much harder.
It's good you're in the system, because at least now you'll get some answers. It's a rough time for you though, so please be kind to yourself. No matter how braced you are, it's still emotionally very tough to get through this process. And it's ok to feel all over the place - you're bound to.
Our son still has very limited understanding, so I'm probably not the best person to advise. We talked with his siblings about his brain being different and working differently, which is why we had to be kind. I think your plans for explaining it are good. If you can, try and get some visuals of where he's going to keep his anxiety as low as possible.
Posted 11 April 2016 - 09:08 PM
Well it looks like I will just have to take what comes as I know it's so difficult a varied topic to try and guage.
Either way youre right, I am in the system now.
I've taken notes etc ' a timeline' of sorts to take in with me so as I do not forget important stages and events that L has undergone, I have a tendency to have brain freeze in these situations otherwise.
Posted 13 April 2016 - 09:32 PM
It's great you have an assessment date.
We are in the system again for the second time (dd) and have also just received an assessment date with a community paediatrician. The school referred her, whereas with ds1, we were struggling at home but school saw no problems. We are in Scotland also, but I don't know how similar the system is across the country, or whether there have been changes in the last 5 years.
With ds1 we had an appointment with the paediatrician, who then referred him on to the Speech therapist and the Ed Psy, and all three reports were then taken together to give a diagnosis. It took over a year for all this to happen, and then they forgot to give us the final diagnosis (early lesson in always following things up...).
DS1 was 10 when he was diagnosed, and we were not aware that he was being assessed for Aspergers until about 1/2 way through the process (we thought we were just dealing with behavioural difficulties at home, having been told by everyone else who knew him there was no problems). I remember the SALT telling me about differences in his language processing and suddenly realising where it was going. The SALT at the time followed up diagnosis with the Peter Vermuellen "I am Special" course, (which he hated, but he kept the info under his bed and it helped I think).
Dd has some understanding of ASD, but she has also had a very difficult relationship with ds1. Until very recently ds1 has taken all our energy, and your post has made me think that I will need to spend time over the next few weeks to try and see what her understanding/perception of ASD is (and probably ds2 as well)...
I'm also not good at thinking on the spot, and go to everything with as much written down as possible!
Hope all goes well.
Posted 14 April 2016 - 08:16 AM
Hi there. I'm glad you didn't have to wait too long for an assessment.
We were referred to SALT and Paediatrician when LE was 3. He was immediately diagnosed by SALT with Developmental Verbal Dyspraxia and by Paed with a Communication Disorder. He was referred to OT and also diagnosed with Developmental Coordination Disorder.
Then Paed sat on the fence for the next 4 years until we were referred to a Clinical Psychologist. She came out to greet us in the waiting room and before we even got to her office she told us he had ASD. It was that obvious and had been for years.
Can't completely blame Paed though as dh in particular was very reluctant to push for a diagnosis and was happy to sit for years on end hoping he would 'grow out of it' which of course he never did.
Good luck with the assessment.
Posted 14 April 2016 - 10:22 AM
Can imagine it's nerve wracking when you don't know exactly what they'll be doing when (be good if they had leaflets about the process really!!). As mentioned above - written notes are really helpful - I took them their own copy and they said it was really helpful.
Let us know how it goes xx
Posted 14 April 2016 - 07:15 PM
Think it might be a lengthy process as he doesn't appear to others to have any real issues. That's a shame and I feel for L because he internalises everything. I also see the difficulties he has socially, he does and says things that I see as odd when in company - others seems to think it's his age or DCD that they blame for absolutely everything. His sensory issues, his anxiety, his struggle with instruction, his lack of imaginative play, his lack of humour, his literal thinking, his need for routine. The teacher and learning support teacher seem to think it all points to DCD, his lack of motor skills is low in my opinion, compared to everything else.
I'm not particularly looking for any diagnosis, what mum would be, I just don't think it's right for a 7 year old to be going through so much anxiety as he does. So if I get anything from this it will be ways to manage his anxiety.
Guess it's another waiting game, surely they need to make this whole process easier to navigate. And not so different depending on regions, it makes it harder for people to explain to those undertaking the process what may happen.
I have another question for blue water, as you received your assessment in Scotland did you have to fill in any long forms before your assessment? I ask this because my friend is also seeking a diagnosis, her boy is 16 and she has to fill out a 13 page questionnaire before she attends the appointment, I haven't received anything bar the initial letter with date of appointment? She's confused me a bit.
It's so annoying, not knowing what you are looking at, or the timescales as it's the kids that suffer - them and my nerves.
I'll let you all know how it goes x
Posted 15 April 2016 - 06:34 PM
So much of what you've written sounds like my son. I first got help for his anxiety at age 7 and like you school didn't really see it. He just shut down in school. It wasn't until he tried escaping in yr4 that they believed me!
It was a private psychologist who we employed to do therapy who suggested ASD to us and it all began...!!!
Have you ever looked at PDA - it's just that's the diagnosis we have eventually got to (via Asperger's but not quite right!). It was the underlying anxiety you're describing which made me wonder.
Posted 15 April 2016 - 06:45 PM
We have only got a letter with an appointment time too. We weren't sent anything ahead of time last time, and so far haven't received anything for dd.
I think for ds1 at the initial appointment, I remember the paediatrician asking dh and I a lot of questions about his development and current behaviour, and then chatted with ds.
We thought we just needed help managing his behaviour, not realising he would get a diagnosis of ASD. I think the whole process should be clearer too. It also didn't result in much help, we have often been directed to our "local" support group 1 1/2 hours away...
However, after the nightmare last couple of years, having a diagnosis already has been helpful, and it has meant he's finally been placed somewhere with good support for ASD for now.
I think because the school referred dd, her teacher did fill in a questionnaire supporting the referral.
I hope this helps and good luck.
Posted 25 April 2016 - 05:50 PM
Just came back from my appointment with Logan with the paediatrician .
Went well I think, she done a background history with myself and dh, then spoke with L.
Good news is she is willing to investigate further, she supported my view of possible of Asd although of course couldn't give a concrete.
The not so good news is she needs school to support it with a similar finding, she wants them too look further in to Logan's behaviour at school and then report this to herself. The school I don't have much faith in as the learning support teacher has already said she's not sure where they can help as they dont see any behaviours. It's so frustrating. At least she referred us to OT and at least thought possible DCD?? This means she sees something right?
Without the school the peadetrition probably can't progress down an Asd assessment route due to needing a joint agreement from health and education. She's already said this and would then look at a CAMHS route to help with his anxiety.
Hopeful the school will refer to ed psychologist who will have the time too observe Logan properly.
Still I guess I'm on the path now so that's a positive .
God it's such a roller coaster ride of emotion, I have felt, nervous, elated and emotional (sad) all in just a few hours.
So now it's a waiting game.
Oh and I've got a telephone call from the OT tomorrow night who will then decide if it's warranted to meet with us and move forward.
It's so complicated and tiring because the letter from OT came with a list of questions that she may ask so I'm going to have to look at them tonight and prepare some responses.
There's no quick way forward for any of this its gonna take a couple off years as they can only assess so many at a time and the list is huge, if it's Asd we are looking at.
Oh well here we go .... X
Posted 26 April 2016 - 06:12 PM
I'm glad it seemed mostly positive.
Sometimes school don't see, or don't want to see, anything - our HT blamed parenting for ds1's problems for a long time (quote "we never have any problems at school" - not correct as he was involved in being bullied and then bullying, along with other controlling behaviours that grew so out of hand as a pre-teen / teen).
Good luck with the OT
Posted 17 May 2016 - 02:02 PM
Hi, Sorry I haven't been on the site for a while. I'm also in Scotland and son #1was diagnosed in P4/5. He had a diagnosis of DCD at age 4 and as he progressed through the school a temporary HT asked the Ed.Psych to get involved.
She then started the referral process. It took about 18 months. We had to go to our G.P. for the actual referral,they were reluctant saying it was an education issue.
We did have a large form to fill in prior to a joint meeting with the clinical psych and community paed (he also had individual appointments), ditto with speech and language therapist. There were lots of school visits observing DS in class and in the playground. The diagnosis was given at the school by the paed and HT.
The school was very helpful throughout and the HT was very supportive. I think different authorities have differing proceduresbut they should follow similar protocals. Good Luck. The OT was great, my son loved the sessions and a motor group was started in the school. DS now loves P.E and while he finds team sports tricky he finally started playing football at 10 and rugby at 12.
Stick with it and good luck
Posted 08 June 2016 - 07:01 AM
I take it all back, have just filled in monster form between two appointments with paediatrician...
Posted 09 June 2016 - 04:39 PM
We aren't quite their yet, the paediatrician is still information gathering and will decide after the holidays what route they are taking, so we've still got a while to go.
Posted 21 June 2016 - 03:10 PM
We have a second appointment with the paediatrician tomorrow - not sure how it will go. The thing is aged 7, and quite bright, she's just seen as quirky and independent, with the odd temper flare up.... roll on a few years to high school and the story might be quite different.
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