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?

Hmm, in that case maybe the activity centre is a good idea, the trouble with ds was that he wasn't happy being put in anything when I had anything to do, he also hated being on his back (we didn't even use a baby gym). So I carried him around for an awful long time, I used to put him in a baba sling to get on with stuff but he is so huge, that it completely did my back in, and probably did nothing to help with clinginess. If Orange would be happy in one, whilst you could focus on dd for a bit, then I would go for it.

Why oh why did I say dd1 could have 3 friends back for a jubilee tea, dd2 is still bleeding everywhere (but driving me up the wall at the same time, by trying to carry ds around the house - despite nearly being the same size as him!) whilst i am trying to make cucumber sandwiches and hang up fecking bunting.

Hiya

DS1 had jumperoo bouncer, similar shape to the play centre things, that he loved and fitted in for ages as he was so dinky. I was quite strict on the no more than 10-15 mins a day though because the support was between his legs. It took him until he was around 9 months to work out how to bounce in it though. He now has a mini trampoline and still loves bouncing and his physio has said it's made his legs much stronger.

We have a trip trap as it was recommended by an OT friend of ours, we used the baby set and rolled up towels for support. He now uses a standard booster seat but does tend to slouch so I have to strap him in quite tightly.

Firstimer, if you can get a copy from the library I can recommend a book called "What Mothers Do - especially when it looks like nothing". I think working makes you used to have measurable outcomes each day and you just don't get that with parenting, even less so when you're child has delays and it's so hard not to blame yourself.

Ooh, i will look out for the book. I have been a SAHM for 6 years now, and could do with something that reminds me of the value of what i do. I am planning to try and start my own business (I used to be an antique restorer) when I am able to leave ds in preschool, I find myself terrified of having to do something outside of looking after ds and the girls, but part of me craves to do something creative.

Getting the activity centre sounds a good plan to me. If I can dig out the insert for the antilop, do you want me to send it to you? Pm me your address if you do. I'm afraid ds got stuck in a tripptrapp as well, I think he inherited the size of his bottom from me.

Am having a very large glass of wine and chocolate to recover from dd1 jubilee tea party - which was hell. the only positive being that it is strangely therapeutic to see other people's children behaving appallingly!

I meant to say, i get exactly what you mean about riding the waves, and accepting the need to hibernate, i am exactly the same.

Hazey, wow you used to restore antiques? What a fascinating job! I used to work at a University which ran a furniture restoration degree. Every year I went to the summer exhibition of the third years and marvelled at the work they'd done. I couldn't believe the state things were in and then how fantastic they ended up looking.

I think parenting generally is massively under valued by society and when you don't work I know I quite often feel very excluded from involvement in any sort of life outside of the children. That's why I love that book, it reminds me how important every little moment you spend with your children really is.

We're off to the village jubilee picnic on Sunday with some other families so am quite happy that at the moment it looks like it won't be raining in Cornwall by then!

Feeling a bit down. Just had a few friends for a jubilee tea party. Just 3 other children aged 17m to 2.5 and their parents. DS2 had a lovely time but DS1 hated it and just kept waving good bye to everyone and wanting to sit being cuddled. In between he was trying to pull the hair of any child that passed close enough.

I feel so frustrated and sad, both because he just couldn't access having fun in this situation and having thoughts about not being able to do this sort of thing again as he just can't handle it.

Thanks Mavis, I'd welcome any tips. I find so sad because he just loves people but doesn't know how to initiate contact with children, how to play etc. And also in a selfish way that I can't just relax and enjoy a social situation because of having to be so focussed on him and making sure he isn't pulling out the hair of other children.
I spent the whole of last night thinking how much better our lives would have been if he didn't have these development issues and envying my friends who don't have these things to contend with. Not a good way to start thinking.

funny hazey - furniture restoration was somethng I wanted to learn if we ever got some more space. I have an uncle who used to do this in Germany. Beautiful things he brought back to life!
hanbee - sorry for your tough day. I hate those times when I envy other people and that their children just develop without lots of effort and modelling and teaching. But at the same time I feel like I also have to accept that I feel like that

I loved doing antique restoration, it was something I fell into after years of working in record shops and cafes after leaving art school. I was very lucky. I just hope I will be able to continue doing it in the future.

Ds had his annual Ruth Griffiths assessment today. The paed was pleased with his progress overall, although she was realistic about how slow and how much work has had to go into it. She noted how difficult it was to get ds to do things, and how frequently he has to be shown and guided, and also how tired he gets from doing even a little activity. We have to wait for her to send a report, but she said he was roughly a year behind (so level of a 10-12 month old) apart speech and language which she said was severely delayed so more like 18 month delay. Just trying to process it all really.

She did say that she thought we were doing extremely well in trying to help his development, which made me feel better about my efforts, which of course never feel enough.

By the way, Hanbee, I meant to say how sorry I am about feeling down. I have always been someone who needs people around, but ds is only happy around certain people, and it can be very hard to explain why he has his face buried in my chest, screaming.

In light of the developmental paeds assessment of ds's severely delayed speech, I really should have avoided the 'what did your 2 year old say today' thread in development!

By the way, does anyone have any good recommendations for Makaton resources? And which would be the best Hanen book o get?

Aaagh, MissMavis, I've just remembered - the insert, off to cupboard of doom now.....

Thanks Hazey. I'm trying to cheer up about it as it doesn't do any of us any good. I saw your post on that thread, and thought it was really sad when the other Mums didn't acknowledge it, didn't know what to say I guess. All communication is great in my book, DS1 started at 2.5 after 18 months of me signing and chatting away. A year later he has nearly 50 signs and is occasionally joining 2 together and attempting to babble/make first words. His progress is amazing. DS2 is 19 months and joining two words and coping 3 word phrases. It's odd I want to crow about both their achievements but don't want to become one of "those" mothers!

Thankyou, HotheadPaisan (good name) - hope things are ok with you.

I know Hanbee, I felt a little invisible on there! I asked a question and was roundly ignored! But I'll try here, has anyone seen the Sookie and Finn dvds for children with speech delay? Someone mentioned them on the thread and the reviews on Amazon look very good,

Dh and I are writing a list for presents for ds's 2nd birthday next month, and figure some speech orientated gifts would be good. The developmental paed admitted that SALT provision in our area is so poor that we would be better off trying to train ourselves.

How is everyone getting on by the way?

We are having a very wet half term, dd1 is bored, dd2 has a horrible infection of the nostrils (bizarre!) and miserable on antibiotics, I have a cold and a huge burn on my arm (also on antibiotics!) and my mum is visiting and driving us all a little bit crazy!

Hi folks,
On Hanen we have 'It takes two to talk' That seems to be the standard one for non-autistic children. Its very useful and our SaLT uses it too. The cheapest I found was on winslow for £33.95. Its really helpful in terms of giving you confidence that you are doing the right things when everyone else goes on about 'chatting to their child all the time - people think Im crazy ha ha'. Talking to our D all the time would just confuse her. I now have a very paired down appraoch and only use very few signs and in a very specific way.

Hazey - On DVDs maybe try watching youtube clips and see if he takes to anything? My D is v random but loved Mr Tumble on youtube so I got that.

The big news is that our girl might have her first word: 'up'. Its more 'ah ah' but she seems to have realised the sound means something and is dead pleased if she gets what she wants from using it. She also understands it when I tell her to go up to get a bubble. Brilliant as shes using langugae to communicate rather than label! Its beyond lovely as we have had almost no signs of any language comprehension/usage until now. Her SaLT put her up into the commuicator bracket in Hanen this week too!! I had kind of stopped reading the book because I found it too depressing to realise how far behind she is with language

PS Hanbee -- please crow all you like. We have a crow deficit we need to fill

Hazey - my H did a hanen course. It was long (2 hours a week plus home visits over 2 months). But they just covered whats in the book. Useful tho was videoing interactions and analysing it later. You spot subtle interaction attempts that you miss when you are in the thick of things. you can probably replicate that at home even without specialist input.

Hi

I've never heard of those DVDs Hazey. I'd be interested to hear about them though.

I also have "it takes two to talk", been a while since I read it though .

I've been using the book "Baby Talk" by Sally Ward( a speech therapist) Ignoring the age ranges and concentrating in the stage he's in developmentally. It's my fave book!

I've just had a call from the paediatrician to tell me that DS1 has inherited his deletion on chromosome 6 from DH so they consider it a benign copy variant, and not the cause of his developmental delays. (no mumsnet 'not sure how I feel' face).

How is everyone? Do we have a baby yet used2? I have totally lost track of your due date. Do post when you can.
Am plugging away at the childrens centre. I can jump through hoops if I must. I have heard more good stuff so am hoping it will be worth it eventually.

Do it Mavis! I can't rate Makaton enough. It is DS1s language and I'm so glad I signed with him. It took 18 months for him to sign back but a year on he has loads of signs (this week he's started signing "sorry"; sadly he needs to say it a lot as his behaviour has been just dreadful recently). I nearly gave up signing many times but I'm glad I persisted. Try looking at some singing hands vids on YouTube, I find they're a great way to teach lots of new signs.

Firstimer, good for you for persisting even though they've not made it easy for you.

If you're up for some SN mum crowing (brace yourselves!) this week DS1s learnt to pour water from one container to another and then pretend to drink - an amazing skill for him and linking two play concepts which is huge progress; started putting in form board shapes that are more complicated than circles, squares etc.; started putting crayons back in the box when's he's done instead of just chucking them, or at least picking them up when I tell him too!

Just think Mavis, when you're finally down here we can take our DLA renewals to the pub and do them whilst drinking our own weight in wine!!

Total YAY! on the progress hanbee - crow away it always makes me happy when one of ours does something new, it gives me hope!

Hello everyone! No baby yet I was due last fri so am now almost six days over-and worse I think I should have been due last tuesday. Feeling frantic with it tbh keep obsessing over DD's birth where she got stuck and she was five days early! And worrying that her birth caused her issues although I have been told it would be highly unlikely.

Hanbee thats the same that happened with us with the chromosome deletion (on chromo four for us) first the geneticist rang and said the deletion could be the cause and there was another child on the database with similar problems and the same deletion-then a letter saying it was found in me so discount it! But then last appointment she said actually the other child on the database had a mother with the same deletion so its possible its relevant after all but we won't know for sure. Also not sure how I feel.

I really must do something for dd to help more with communication. We did makaton but I have not kept up with it well and DH needs to learn too, would love recommendations of dvds or books to help.