Is anyone else starting out on the road to a diagnosis? Fancy holding hands on the bumpy path?

[hazeyjane]

Ds (10 months) had 2 appointments in one today, a medical assessment and developmental assessment. He was referred at 7 months to the community paeds, due to developmental delays.

We are now booked in for some blood tests next week, and some physio, and have been referred to a SALT, for portage and to a special needs playgroup.

It is all so overwhelming, on the one hand I feel so much better, after months of waiting that I am able to do something. On the other hand I feel as though everyone is still scratching their heads over ds, and I just want someone to say, 'ah well Mrs Hazeyjane, your son has -- thats why he can't do these things, (well I don't, obviously I'd rather they said, 'ds will catch up and there is no issue, now be off with you'!)

I know that this is going to be a long process, is anyone else just starting out, or a little further down the road, for handholding, venting and advice?

I keep starting a post and then getting distracted, so I'll keep it brief.

Hello Firawla, glad you have found us (the photos on your profile are lovely)

Glad to hear from you again, PedanticPanda, do you feel anything has changed for you or ds now you have a diagnosis? I hope you are both well.

Hanbee, that sounds like a nightmare, myotonic dystrophy is something that we have googled anyway as ds was being tested for all the dytrophies, a horrible time of waiting and googling. I hope you get something sorted soon,and don't have too long a wait.

I too read jimjams thread, it is beautifully written, and amazing to see the difference that both surfing and the talker have made to all their lives.

We went to the paralympics on Thursday and watched the athletics, it was beyond amazing. I found the whole experience quite emotional, from sitting on the train chatting to a beautiful 9 year old girl who had cerebral palsy and wanted to do horseriding, to watching an amazing chinese blind triple jumper hold the attention of 80000 people in the palm of his hand. Ds slept on my lap through the whole time in the stadium and the dds were amazed by everything! It was wonderful to be somewhere where there were so many people with disabilities and it all just seemed normal. We borrowed a wheelchair in the stadium for ds, and when he wouldn't get in it a volunteer offered to push me with ds on my lap to our seats, and pick us up at the end of the session. It was awesome.

Hope everyone has nice weekends planned.

Hi me lovelies,

Sitting back drinking a glass of fizzy wine after a Thai curry on my mum's birthday. Made a coffee and praline cake with DS2, cake everywhere because he insists on doing stuff on his own.

DS1 has his neurology appointment, 31st October, so not too long to wait.

Staff from the CDC came round yesterday to ask loss of questions to prepare for DS1 sitting there. It was not the best start - boys had a fight over a toy, DS1 spat milk everywhere, dS2 ran around like a nutcase and then wee'd on the SALT (second day of potty training). Must have looked like a v inept parent. Sigh (and small giggle).

awww lol @ your ds2 weeing on the slt!!!

hazeyjane paralympics sounds amazing! and thanks for the comments on my photos

i have been a bit stressed out again! ds2 was supposed to be starting nursery in january in ds1's school but they left it til now to tell me they cant take any children in january anymore, really dont understand why they couldnt have told me this so much earlier. so having to try sort something else out for him, and obviously a bit worried about sending him anywhere - dont know how he will cope but every professional ive spoken to has said it should benefit him so i suppose i have to give it a try and just hope he is able to cope. he may suprise me and be fine, but just dont know how he will manage to make his needs known without words (he can sign more but i dont think most places unless special schools or with very good training, know that many signs..), and dont know how he will cope with children coming into his personal space or touching toys near him and that kind of thing. all this would have been an issue anyway even at the school i thought i was sending him to, so dont really know why I am worrying more now, but I just am! anyway there is still time - but just seems like there is always something to worry about!
and slt has put him on an 8 week break which is a bit annoying as we waited soo long for the sessions in the first place, and hasnt had that many, and now a break already! i can implement everything at home but i feel better with more professional involvement rather than being just left to it
waiting to hear back some feedback from his ados research so hopefully that wont take too long and hope they give me some detailed-ish feedback and not just a one liner or telling me to just wait and see what cdc say

firawla - I had all these worries when DS1 started preschool this time last year just before he was 3. He had 2 words "Crrrr" (car) and Dada, he had only started signing 6 months earlier and had a limited number of signs. I visited 3 local preschools and spoke to their SENCOs, I took DS1 and my Mum with me, they could then meet DS1, I could see how he reacted to them and their premises but I had my Mum to keep an eye on him while I spoke to the staff. This worked really well for me. I ask lots of questions about their experience of other children with SN and asked about signing, how they included SALT exercises given, Physio exercises given into their day. I have to say ALL of them had loads of relevant experience, many of them had done Hanen course with the speech therapists and several had done Makaton training. In the end he preschool he went hadn't done any Makaton but I was so impressed by their attitude and the way everything was run. They organised Makaton training pretty sharpish: sent all their staff on Saturdays, invited other parents to go on it too and included signing for all the children every day as part of song time. They have been fantastic, DS1 loves it there and has come on massively over the last year: now has over 50 signs and knows all his colours. Yes, we still have glitches with behaviour but he still goes there one morning a week even though he now has a place at a specialist Child Development Centre. When he went back last year the staff said how much they'd missed him over the summer .

Hello everyone, wanted to come and wave to you all as not posted for a while.

Hazeyjane - Paralympics sounds like a great day, I must admit I missed most of it as we finally moved and have been busy unpacking boxes and dealing with DS massive sleep regression. Had first OT appointment today, took DM with me as DS was having a meltdown day and DH is away. OT talked about asking social services for a tumble form seat and we were saying how much the Paralympics will do for the perception of disability / additional needs. To hear the use of 'social services' in the context of my PFB is so bizarre, but really shouldn't be, all these agencies are what we desperately need to help him progress. Still not sure about all these labels but hope the Paralympics will have done a lot for general understanding.

OT has a hunch DS has sensory issues, of course have gone google mad tonight and am sure got it all wrong but a tactile aversion makes a lot of sense for DS. He doesn't use hands and hates his feet touching the floor. Breaks down if the wind blows in his face, and so many other little sensitivities, it seems to make sense, but who knows. Feel like we have moved onto the next stage though, results are coming through, assessments are being made and SN groups are being found. Typical we have moved borough at this critical time but am hoping we can transfer relatively easily and the consultant is happy to keep the 'test' side of things with them.

Now, if only I could get him to sleep through the night and take a bottle so I could have a night out.......

hanbee that sounds great!!
i went to see one nursery today and it was horrible - no way will i be sending him there! i wouldn't even send my other nt kids there either, but they seemed clueless and dont think they would have the 1st idea how to support ds so thats a definite no. saw another one which looks more promising but not been round for a proper look and discussion with them yet, so will see

Hello, that preschool sounds amazing, hanbee!

Ds will do 1 day a week at sn nursery and 2/3 mornings at the preschool at the end of our road. they have a really good record with children with sn, and are sending one of the staff on a Makaton course. I have a feeling I will be going with ds for quite a while, because he is so clingy, but the staff had a really good and gentle attitude, which I liked.

We have a meeting on monday with the ot and physio, to discuss the fiasco of a session from a few weeks ago. I am dreading it, but I have printed off the thread on here, where people gave some good advice, and dh and I have written down our concerns. I have been using a mini communication board on a key fob with ds, and it is great. We only do it with a couple of cards, and will build up gradually, but ds 'gets it' and I hope it will help with frustration.

has anyone on here had a dc who bangs their head? Ds has started doing this a lot. Sometimes it seems to be an automatic thing, and he seems to enjoy it. Other times it is definitely frustration, and he will lie face down and smack his head very hard on the floor. It is horrible, but I don't know if it is just a 'normal' thing or a sensory thing?

Bollocks, just had a phone call from the transport services to say they can't find a driver for ds's hydrotherapy session tomorrow. It is his first one, and now i am going to have to phone and cancel. I am gutted. I wish I could pass my fricking driving test.

Hazey wish I was a bit closer - I'd take you to hydrotherapy!! DS1 sometimes bangs his head, he used to do it more but now its often on the wall by the side of his bed as he rocks on hands and knees to get himself to sleep. It's always disturbed me that he seems to not be aware he's doing it... NT DS2 (nearly 2) headbuts things in a tantrum q often, he's a bit of a handful.

I've just been reading used2's thread about her DD1 at school and am now having major worries about school for DS1, I have to make the decision by January and I just feel that there isn't enough time....

Thanks Hazey and firsttimer, I left the thread for a while as I felt bad moaning about my problems when you all seemed to have so much more to worry about.

I feel relieved on the one hand, but devastated at the same time. Dealing with daft comments from people have been difficult too. DP's aunt said "oh that's good, you'll have a very intelligent boy there.", to which I replied "No we wont, he scored very low on his cognitive functioning assessments, and if it wasn't for his verbal understanding scoring at average then he'd be dx with LD too.", I then had "Well he must be intelligent, he has your genes and you're smart."

"No he wont, he has a bloody developmental disability! Are you even listening to me!!!!?" (ok well that's what I wanted to say but instead I just mumbled "mmmm well no he wont." She then went on and on about x down the road with autism who my DS must just be like since he has autism too , or when she then said "is that just like x (my stepdaugher with severe Rett's who can't walk, talk, crawl, or control any of her motor functions!!)", And the best: "You'll be able to have another normal child though wont you if you have a baby?"

And other comments from friends saying "Oh but my dc does that too", or "maybe he was just too smart for all of the assessments they were doing."

thankyou, hanbee that is a very sweet thought.

have had one of those days today. worrying about ds and this head banging thing, he has a huge red mark on his cheek where he smashed it against the sink,but he doesn't seem to notice it is hurting him. i have dosed up on painkillers for my neck which is killing me. How do you manage to restrain a 13 kg boy from hurting himself without doing yourself an injury!

I also had one of those school run moments where i just wanted to disappear into a hole in the ground, as a group of mums with dcs the same age as ds were all talking about potty training, and I had to stand there grinning inanely, because ds is about as close to potty training as he is to understanding algebra.

anyway, it is fri, and i am going to have pizza and drink wine, and all will be well .....when my children go to sleep!

Hello all, just thought I'd post a link to this article from the Guardian. I thought it was so well written, honest, positive but realistic, it really chimed with me and dh too. It is interesting too that his ds doesn't have a diagnosis at the age of 16, this bumpy road can obviously be a very long one.

Hi everyone, thanks for the link hazey - I loved the sense of how lovely he clearly is. Im rooting for you today at your appt with the OT.

Sorry about the school run moment - I guess that never really ends you just ahve times when you realize how far away from mainstream experience you just are. We have been having a good run of things - weve started at an SN placement 3 hours a week DD gets played with in a variety of sensory rooms which shes enjoying and I get to meet some parents in similar positions which is something Ive needed for a long time. I hope it continues to go well.
PLus we went to a party and caught up with lots of friends from what I increasinglyt think of as our 'old life' and I was pleasantly surprised that I am just more able to talk about whats going on without feeling the total anguish that I used to. Its just more a part of every day life and Im glad of that.
Hope everyone's well

found it

SN playgroup is throwing up some interesting issues for me and I thought I would just throw them out here to mull over: there are parents with children whose conditions are very severe and life limiting. To some extent it puts our troubles into perspective, in another way I feel I dont want to belittle what we are going through (not that anyone among these parents is doing that) nor do I want to be seen as belittling what other parents are going through by implying its the same as us.

Yeesh Im never happy it seems - well not really that - just it feels complicated - Id like to support these parents and acknowledge the severity of their situation - but I am a little unsure of how much they want me to say anything that implies 'goodness that really is awful' on the other hand I dont want to say 'oh we are fine' its only GDD.'

Excuse me if I sound like a right worrywart. Nothing has really happened in terms of an exchange thats left me feeling uncomfortable. Its more that I want to be prepared for how to react in tricky situations. I know only too well how people can say things that are hurtful and insensitive and I dont want to be someone who does this to another parent. Thoughts on this much appreciated.

ON a totally different issue. We have had request from our functional learning therapist to use our report alongside a launch of a book on this method in Scotland. My issue with this is that I feel the report overstates the impact of the therapy by making it sound like the progress we have seen comes from this. I dont want to mislead other parents. When your child is struggling there is such a temptation to throw money at interventions hoping they will be decisive. I dont wnat to be part of advertising something as providing a clear benefit when that hasnt really been proven...We dont actually have any idea why DD has recently made such progress. I feel a bit mean tho but...otherwise I would feel irresponsible. Does anyone see what I mean? WWYD?

Thanks for the feedback Mavis. Helpful to hear what other people think, if only to feel I am not overracting. Are you in Cornwall yet?

GoldPanda - how are you doing post-disgnosis? Im wondering whether your family and others are getting any better in nderstanding whats happening yet..
Just to feed back on whats happening here - we decided after a bit of fiddling with the report to determine what we would have to have altered if they were going to use it - just not to go there at all and outright refused. Just seemed easier on the relationship with he therapist not to go through specifically what we were uneasy about. Opened my eyes as to how skeptical I really am to her methods actually. Maybe we wont be doing that again at all

Just had VTSS round to discuss schools. We will be going to look at a few special schools in the next couple of months. Weird to think we could possibly get in to one. But the professional and therapeutic input she would get sounds amazing and I would be v keen on that right now. It has left me feeling a bit freaked. Its crazy that my family of medics is pooh poohing me as neurotic when the LA is advising us on special schools. Ill be accused of Münchhausens soon... oh well sometimes you just ahve to stick at what you know is right I guess

Hello, have had a busy rl, week with family visiting, so haven't been keeping up! I have found myself in similar situations re different sn. At ds's sn nursery, no-one discusses their children's conditions, although it is very apparent with some of the children that they have very complsex needs, with peg tubes and o2 tanks etc, but there is not much chat between the parents anyway, which is something I find a little strange. At hydrotherapy (which we started last week, and which was fantastic), it was the opposite, with 2 mums asking me what ds's condition was, before they had asked his name! They both had dcs with quite severe disabilities, and when one of them said that ds looked 'normal' I found myself justifying why we should be there! It is peculiar, because amongst his nt peers, he looks quite obviously delayed and 'different'. Ah well, I figured afterwards that we just have to figure out the right path for ds, and do what will help him best,and sod everyone else!

Has anyone here had any sort of heart scan/ultrasound? I have a little niggling concern about ds at the back of my mind. He had a heart murmur when he was born, which was found to be innocent, but I have always had concerns about his circulation - he often has swollen feet, he has feint blue lines around his mouth sometimes when he sleeps, and I know that recurrent respiratory problems can be related to heart issues. I will ask his paed at our next appointment in October, but I just wondered if that sounded concerning to you lot - our paed can sometimes brush things to one side a bit.

Hope everyone is having a good week.

Hi Hazey - just to say I also wondered about the etiquette of asking parents about the different children and felt a bit awkward but luckily they seem fairly forthcoming in this particular group. Altho today I realised that one parent will be applying for her son to go to the same SN nursery that on paper at least I like best and felt this sad realisation that at some level we will be competing for the limited places available and that that migth actually make things unpleasant somehow. I ahte this sense that theres just not enough to go around and that its so important.

I would def mention your concerns about the heart issue and detail the swollen feet, heart murmur etc. I think people are often too busy to string the different clues together

Hi All,

Sorry to have been so absent. rl just been v busy and tiring as DS2 is just not sleeping well at all so I've had very little time off.

Not much to comment on except that DS1 starts his CDC nursery on Monday and I am now starting to panic about school choices.

I find it odd that some parents would ask straight off about what condition/disability your child has. I would never ask as I always think that information should be discussed only at the discretion of the parent/person with the disability.

Firstimer I was majorly stressed about DS1 not getting a place at the CDC. Really worried about if he didn't get in we would fall between the cracks again and get offered no support. I talked (got upset) about this at a TAC meeting and got a fantastic reaction of support, with the Ed Psych saying she thought DS1 was a priority and that she was on the admissions panel - worth a go?!!!

MissMavis, i have just read your blog, and as often seems to be the case with others on this thread, we seem to be living in a parallel universe

We are planning a conversation with dd1 and 2 about ds and his issues. We realised that they understand that ds gets ill a lot and spends a lot of time going to the drs, and seeing therapists, they have met his portage worker, physio, paediatrician and seen him rushed off in an ambulance twice. I was quite surprised when dd2 said that ds was disabled, (in a conversation about the paralympics) and I heard dd1 explain to a friend on the bus the other day that ds can't talk, because he needs help to do things that other people find easy. recently we realised that they do realise a lot of what is going on, but we have never sat down and talked to them about it. Dd1 has been struggling lately with a lot of stuff (anxiety about school and friendships) and she has been seeing the school counsellor, one night when I was talking to her she said that she wished she was special like ds, and that everyone loved him most, because he was so special. It was so unsettling, I realise that there are often these sorts of issues between siblings, but it would be so easy for this to be accentuated by the fact that ds needs so much attention, and dh and I have to spend a certain amount of time worrying about him.

So we are going to sit them down, and explain that ds has probably got a difference in his genes (we have been talking about genes, because I am organising a Jeans For Genes fundraiser for the girls school, and they are doing the cake sale) and some of things that that entails. It is such a touchy thing, because I don't want to talk about it as a problem, and I don't want to make it seem as though ds is in some way special, but I think it is important that it is done, especially as ds is getting older, and it is more apparent that he is different. Even my friend's 2 and a half year old said today, 'ds can't talk' - it has been a difficult day!

Anyway, it is strange that dh and I were just talking about how we are going to word our conversation with them, and then i clicked on your blog.

Your namechange has just made me burst out laughing! The Rum Baba was always my nanna's favourite cake, and my sister and I just used to think it was the campest looking cake ever!

Glad your ds enjoyed hydro. Ds loved it here too, although i stuggled a bit as the pool is so deep and I am only 4'11'', so the water came up to my chin!