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?

PS: used2 - isnt it brilliant tho to have your judgement on the epilepsy meds backed up. Well done you made the right call!
On eating - I hvae doen a lot of misery eating over the past year and a half - I am on my fitness pal now. Its really v good - and free so..bonus!

Thanks hazey and firstimer and sorry to hear about your bad day too hazey, firstimer is right all the looking up and decision making stuff is exhausting and bound to take its toll.

I had a better day today in that I went off to meet my cousin and spent the day shopping (well to be honest more waddling about and stopping for frequent food/drink breaks!). I think I tend to wallow when I am alone too long with no plans. Still really worried about school choice but think there is not much more I can do for now. I have barely given this new baby a thought, not een really got names sorted and could be any time now.

Have just been out for dinner with an old friend so busy and expensive day but really worth it we had a laugh over what we used to get up to pre children and it was good tp just relax.

My fitness pal, is that the site that adds your calories up?the facit does it for you appeals to me and I don't want to make myself miserable over my weight again like I did after dd where again I comfort ate then felt bad and did it more.

my fitness pal is a bit like facebook + mumsnet with a calorie calculator attached. I am logging what I am eating and it helps. Probably not the right time to start just now I expect. But for me it took the emotional stuff out of eating - I really pile it on when I am unhappy.

me too firstimer, I will be on there then when this baby is born and I have given myself time to get sorted it sounds good. I am sure I stayed bigger than before after dd because of comfort eating and making allowances for myself due to the stress of it all.

Mind you, this time I will be busier with DD too so hopefully it will come off more quickly.

Just about to order some visula aids and DH has just said he will learn makaton so going to see if I can find a dvd, having more of a get stuff done and focus on solving things day today which shows I feel better.

Hello

How is everyone doing at the start of a new week?

Ds had an ultrasound on his kidneys this morning, which showed no abnormalities, which is good. It did show the most enormous back up of poo, though - which might explain ds's restlessness the last few nights!!

I am going through a list of loose ends and phone calls I have been putting off, and the relief I feel when I cross one of the list is immense. Ds is having a team around child meeting next week, and I am supposed to be organising it, so I am trying to get my organised/take no prisoners head on.

It is dd2's 5th birthday today, so I have just made an enormous chocolate cake - I had to clean out the bowl and feel just a little sick right now.

Used2, hope you are taking it easy in the run up to the big arrival!

Good news hazey!
We just got a geneticist appt ..... for friday! There's been a cancellation. V pleased of course - but also nervous about it.

Thanks Hazey, I really am-slept a lot today after a night worrying because dd cried about going to school LAST NIGHT.Now developmentally this is great, she even managed to tell me that lunch time is scary but I was worried sick about her all night and all day and then she was fine!

Good news on the scan-funnily enough DD was offered a cancellation appointment too, for urology about the urine leakage. They will most probably scan her to see if its related to the surgery she will have as part of her condition.

Great news about the kidney Hazey.

Sorry if this is horribly off topic but I just needed an impartial view. I've been arguing with my DH who works away Mon-Fri about his involvement/interest in our lives when he's not here. Do you think I'm being unreasonable (posting in the wrong section maybe ) that be annoyed that he doesn't read DS1's preschool book to find out what he's been up to all week, want to record a Big Mac message when he's here on holiday to allow DS1 to contribute at news/show and tell so it's not always my voice, take a day off work to visit schools given all DS1's additional needs that have to be considered. I'm feeling a bit like a single parent, with 3 rather than 2 children, one if whom just visits at the weekend!

Much safer posting here! And YANBU. That must be really hard with him away all week. Is he ever able to go to appointments? I am not with DDs dad any more and I get annoyed when he can't attend appointments as its so much on my head alone.

DH doesn't seem overly interested in home link book, I do think men tend to just think we are dealing with it. Not fair though.

Hi Hanbee - I imagine its really tough when one of you is away all week. My two cents are that I do do the (far) bigger share of appts etc. But my H is the one with the main wage (only wage sometimes as I freelance) at the moment and its really important we keep that until I can get my career back on track. Once I am working more steadily tho we plan for him to do more - even if that means he goes slightly PT if necessary.
That said my H does less of the day to day stuff but makes time for the big appts (hes coming for her MRI for instance). I can really see your point about your H doing something for the show and tell. And we also make sure he has a look around the nursery, meets the nanny before hiring etc so I am not making the big decisions alone. But he is an academic and has fairly flexible working hours. No idea if any of that is helpful at all.
Also I dont know if this is a guy thing (I hate characterizing things by gender) but I do notice that I just take more care to know the names of nursery staff etc (he drops her off but he will describe one or other nursery worker + I will go yes thts 'name' etc).. I think for now I would describe myself as the 'lead parent'. I research etc outline stuff to him and he contributes here and there or supports when something tough needs doing. Its not the split I would ahve imagined but this makes sense for right now.

I wouldnt bother posting in relationships btw they all just shriek 'leave him'

The nursery worker name thing really bugs me actually - would he forget names in any other professional setting?!

Ha! on the back of that have just drilled him on the names of everyone at nursery in prep for tomorrows 'meeting around the child' - and made the point that in any other setting he would find out names and remember. He took his lumps.

Firstimer - glad my question had a positive result for you ! I am the full time parent and do count myself lucky to be able to be at home with the boys. He's the main wage earner and has been looking for something closer to home for over a year. He's essentially been away since DS2 was 3 months old so it's not all roses for him i know. He did mention he would need to book holiday to look at schools but it seemed to be said with reluctance, he does take time off for main appointments but I think he resents not being able to use it for normal holiday stuff. It's complicated by the fact that I had surgery in November and have lots of scans and follow up appointment, DS2 has a dodgy kidney do also scans and appointments - we're a healthy bunch!

OK new topic here: we have been offered a place at the childrens centre (this could only ever be part time) BUT only if we give up our daughters place at the private nursery. I kind of lost it with them because they were all like its up to you whether you take up this place etc while I feel they are giving me an impossible choice. Our daughter is well settled at her current nursery. I am happy with the engagement they are making with her various therapists and with us on how best to help her. If we give up that place the likelihood is we couldnt get it back if the childrens centre doesnt work out (and eventually we will need full time childcare - in fact we need full time childcare right now)
We are struggling to pay for the amount of childcare we need. We need more than expected because of her delays and because my H is ill so I have to do a lot alone. Maybe I am being unreasonable but it seems like instead of offering us what we actually need they are offering us something we cant really take up and then saying its us who arent taking up provision rather than them effectively refusing provision by placing conditions on it that make it non-usable for us.

Im angry because I feel like I am supposed to be grateful yet its just not enough at all and I dont really see what other options I ahve.

Oh no firstimer that is really unfair. I wonder if you can speak to your EYSENIT if you have one? Or write a letter to the children's centre area lead? Sorry not much help, may be worth you starting athread on SN just about this as I bet someone will have ideas. If they are offering you something you can't accept though surely it can't be right.

Thanks usedto. I started a separate thread and got some good advice. Also good to know that I am not off the board for being predominantly pissed off with this.

I think we might be heading for our first battle. I was always dead scared of this but I actually just feel righteously angry.

It is bloody unfair how much of this stuff is a fight, and how many things seem hidden so you only find out by other parents telling you. Do you have a local parents of children with SN group? Mine has a brilliant parent runniing it who knows lots of local info and of others with similar battles, it was her who told me about the option of ss out of catchment. Good luck!

Yes, very frustrating. Ds is lucky to have a place at a special needs nursery, but I feel that the access he gets to SALT isn't enough, but because he goes, he can't access anymore unless we pay. It is also difficult that we have to rely on lifts to get there twice a week, so often miss sessions. But when I tried to move him to a mainstream setting, they so clearly didn't want him, that it broke my heart, and we have had to crawl back to the sn setting with our tail between our legs. The thing I hate is that if ds didn't have additional needs he wouldn't go to nursery at all, he would do what I did with the girls, which is stay at home and play and do crafts and visit playgroups and friends and have 3 years of unstructured fun time, which I (and hopefully they!) loved.

The fact that your dd can't go to the sn group is ridiculous, MissMavis, what on earth do they expect people to do?! There are 4 or 5 children with siblings that go to ds's group, one mum brings 4 dcs sometimes!

I hope you get something sorted, FirstTimer.

We are stuck in today as dd2 has heatstroke, so we have fan on, curtains drawn and are watching Spy Kids on a loop, while ds and I play with his new garage - it is the first toy that he seems to actually love, normally his favourite thing is to roll a ball to each other (endlessly!) but he will actually play with the garage, it is great.

We have our TAC meeting on Weds, I am nervous about it because I have organised it, and feel like everyone is going to be sat around the table saying, 'ok you got us here, now what?!' ......or no-one will come!

Hows it going, Used2? I hope you aren't suffering in this heat.

Aaagh, just had a conversation on the phone with sn nursery, which couldn't have been better timed re this thread!

I couldn't go this morning, because dd2 is off school, so called earlier and left a message. Ds's keyworker has just called to remind me how important it is that ds attends regularly, so they can help address his clinginess (I am more than aware of this - which is why I tried to switch nurseries).I hate the fact that they make me feel as though my actions are detrimental to ds's development, I don't know what they expect me to do, if ds has an appointment or one of the dds are ill, or our lift can't take us.

I have just read your blog, MissMavis, and you have echoed all my thoughts on the services that are supposed to be available. At the beginning of this journey, a lovely woman who I have known for ages in a superficial way came up to me and gave me her number, she squeezed my hand and said, 'you will have battles ahead, and it is exhausting and frustrating, and if you need a hand call me - because doing it on your own is a nightmare' I hadn't realised that she has a 12 year old dd with severe autism. At the time I remember thinking, that we were lucky, that ds had such a lot of help on board, but looking back she was right. At the beginning it seems as though all this support is out there for the taking, but in reality it is exactly as you describe - something that looks good on paper, but may not work if your family or child doesn't fit their box. The SALT that ds sees at nursery, has said that it is nigh on impossible to access SALT before 3 unless you take the 5 minutes that happen intermittently as part of a setting like our dcs attend.

I am surprised that your dc hasn't had any input from an OT, although ds has only recently started seeing his every 3 months with the physio, otherwise it was a one off to assess him.Again she said OT wasn't really viable until they were older. If we have needed equipment she has provided us with ideas for products from Mothercare (so we bought a booster seat and bath seat recommended by her). The car seat we bought (with a grant from family fund, backed up by a letter from physio) and standing frame and walker were provided by physio (although I think this depends on how your local equipmment stores work).

Ugh why is it so often assumed it is the family who have issues not that the child has needs?! Really feel for you that must really grate.

I used to do a SALT group with DD and they gave us a little tip each week-it would be something like talk to your child all the time about what you are doing, or take time to get down to your child's level. FFS I didn't think of talking to her-so thats why she can't talk!

He had his standing frame from around 14 months. The physio at the sn nursery was a bit about it, but ds's regular physio thought it would be a good idea for ds, because at the time he was pretty bad at engaging in any sort of play, so it would encourage him to stand and play (with dh or i facing him in frame and putting water in the bowl or toys on the tray) whilst helping to strengthen his trunk, which had a lot of weakness. She also realised that i spent/d a lot of the day carrying ds around, because of his clinginess - so it would be a chance for him to be away from me, whilst feeling secure in himself. We are lucky that the centre where ds receives his physio and sees his consultant, has a really good equipment store. The trouble with a lot of the things that OT would deal with, at this age, is that usually the items are used for a relatively short time. So with the bath seat, the OT said she could put in a request for a SN bath seat, but by the time it arrived, ds would probably be able to support himself in the bath better. As it is, we ended up using a fabric sling support which i had for one of the girls, and making bathtimes really short, because I struggled to deal with him in the bath. It is only now that it is easier, tbh.

Sorry - longest paragraph ever!