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?

Hello FirstTimer, hope Buffy won. (I can't remember who said it, it might have been you, but I loved the idea that mumsnet is a bit like the Buffy episode, Earshot, where Buffy can hear everyone's thoughts - it can all feel a bit relentless!)

We have a physio appointment today, where hopefully we can sort out a new walker. Ds is increasingly unable/unwilling(?) to walk, he seems so unsure of himself, and obviously needs the extra stability.

I'm also going to ask about the what the possibilities are in the future wrt buggies/wheelchair. Ds is pretty heavy, although not very tall, and he will need some sort of wheels for quite a while I think. I also hate the way he slumps in his pushchair, I take him out in a smarttrike push along car thing, and he seems to sit much more upright in it, and just seems to be interacting a bit more when he is in it, so wondered if there was something in between a push along trike (his feet drag on the floor in it now, because it is designed for a 12-18 month old) and a pushchair, that I could be pushing for (my ongoing 16 month wait for a bath seat, has made me realise its good to start the pushing early!!)

I discovered this morning that in lieu of baking, kneading the crap out of a big ball of green, glittery homemade playdough, is quite good stress relief - the downside is that the dcs and I now look like we should be in the Scissor Sisters, with our lovely sprinkling of disco glitter all over!

Crossposted with you Mavis (loving the new name).

The SWAN day out sounds good, I would love to try and make one, if i could work out the logistics, let me know when the next one is - I do check out the Facebook site, but am rubbish at remembering to look. I have found a SWAN type group that is local to me, who hold monthly picnics, I think most of the children are older, but i might try to get along to one.

I remembered something else I was going to post - (my head is full of rambly fluff at the moment, so hope no-one minds me going on!)

Yesterday I was sat with ds looking at a picture book trying to sign, say and show the word as our SALT has said we should as part of his daily programme, as usual ds just grins at me, and occasionally does his 'unh, unh' noise, when dh said 'you know, hazey, I have this overwhelming feeling that ds won't ever talk...' it is something that goes through my head a lot, but never actually say it, and to hear dh just come out with it like that knocked me sideways.

Oh and hope everyone is ok and has a good day today, and i have put a picture of ds showing off with his walker on my profile.

God i can't shut up today - too much coffee.

Thanks all for the kind words - having a better week this week.

bassington - do you know the cause of your son's dystonia and has it responded to any medication? We have tried Levadopa without success and area bout to start trialling neuroepileptics. I'm a bit nervy about them, due to side effects. From what I can gather dystonia in a baby is pretty rare - I just wish I could take it from him.

Mavis - I have had the SWAN UK application form sat in a drawer for months now and you have inspired me to sort it out! Your day out sounds fantastic and it must be great to meet others in a similar situation. (We are also in the Thames Valley area - so really annoyed at myself for not filling it in earlier!)

physio appointment was appalling, am waiting for girls to be in bed so that I can have a huge emotional wobble and burst into tears. And on top of it all, the ot said that ds has no need of a bath seat.

Hey its busy on here

Hazey - Sorry it was so bad, hope you are ok, tell us if it helps. Damn the OT - I wonder sometimes what's it take to get some equipment round here - ps Buffy did win -watched The Gift - cried, slept well.

The idea of a SN get together sounds good. I will have to have a look at whats going on up here...I had anther meet up with other NT children and sometimes I feel their shock at what we are still doing. They are nice but I guess it is a bit shocking - anyway she hasnt slept properly for 3 days - I am hoping its just cos its warm. I do notice the effect of a lack of sleep on my competence and my emotional state. I really hope we arent on for another poor sleep marathon.

Dont lose heart with the walking. I know that until v recently D I was so downhearted and wonderng if walking would ever happen - she also slumps in her buggy. Now shes finally up and walking her stabilizing muscles seem to be coming on much faster - her muscles generally seem to be having a real spurt. Talking is still no where in sight but I keep thinking she can make sounds and I do sense someone in there thinking away so it will come

By muscles I also mean her legs, she still has v short somehow underdeveloped baby limbs - she has a relatively big torso and head and these wee spindly limbs. But recently they are now finally filling out.

Sorry, meant to post last night, but spent evening ranting to dh, then watched Bug and Flight of the Conchords for light relief, wrote a massive post on a thread I started yesterday then ds woke up!

The whole physio thing was about ds's clinginess, which the occupational therapist is obsessed with. Yesterday, ds wasn't doing too badly, playing next to me, whilst I was talking. Then the ot asked me to move away from him to the other side of the room, which I did. Ds fell to the floor crying, and the ot, said right now how would you normally react in this situation. I was kind of thrown, and they said i should just sit and say - 'ds, if you stop crying i will pick you up' and ask him to come to me.

After 10 minutes (I checked the clock) ds - still screaming,started to wriggle across the floor to me, he can't get up off the floor on his own because of his low tone, he couldn't even lift his head off the floor and by this time he was absolutely hysterical and just collapsed again, I picked him up and there was snot and drool everywhere, he was sweating and cold, and then he screamed for the rest of the session, those great heaving sobs they do when properly upset. He spent the rest of the afternoon just wanting to be cuddled.

I don't know whether I feel more awful for not picking him up straight away when he was in such a state, or whether I feel so bad because the implication from the ot is that I am obviously causing ds's seperation anxiety, by being too soft.

I started a thread on sn yesterday about it, and most people seemed to think it was way ott. Dh (who had taken the dds to the park) was gutted that he wasn't there, and said that it sounded as though i had been ambushed. They didn't discuss what they were going to do, I'm not even sure what they were trying to achieve. Between nursery and portage we are working in a gentle way to get ds to be more independent, and he is making slow progress. Yesterday was just brutal, and I can't see how that is going to help him access therapy (which is the angle they should be working from). I am also not even sure what the ot is doing as part of ds's support, she only ever seems to talk about ds's seperation anxiety (is that their remit??)

The icing on the cake was that she said that because it was so long since we asked for a bath seat that ds now had no need for one, because it is 'sufficient' that he stands in the bath, or shower, whilst his sister holds his hands and i wash him - great. Oh and he was too hysterical to try the Kaye walker or have his feet measured for new piedro boots.

Yesterday i was very down, and felt as though i had failed ds terribly. Today i am furious.

Sorry for the mammoth post!!

Hello eveybody, perhaps I could join you? Sorry do not remember all the names and children, should probably write it down somewhere. I have a little undiagnosed man, he will be 3 in November and has been walking for about two months now, and started saying few words recently too - GDD in all areas, I would say he is at around 15-18 months maximum of a nt development. All the tests at Gosh came back clear ... Well the usual story I suppose. Hazey I wrote on your pist, just to add, the OT shouldn't deal with anxiety in any case, she is not trained for that!!! I tend to say to everybody to think of ds as of a one year old child and not a preschooler, that helps sometimes. Poor you re ypur dh comment - I know so much how it feels :( remember thinking just one word please, to see if he can actually speak a bit. When the private psychologist saw him she said often children will first need to walk independently and then talking follows - and it was true for us, ds started saying his first word few days after he started walking - well he crawled for almost a year, so it was also a long wait. Also read somewhere if a child is able to crawl, he will one day walk - it can just take longer in case of our children :)

Oh hazey - Im really upset about this - and can imagine just a bit how you must have felt. Just read your post from yesterday too. FWIW I also think this is outside the OTs remit. Our OT (who sounds exceptional from what I am seeing on here) is always keen to make sure Maya is enjoying the session and has often cut a session short so we can leave on a good note or to avoid a brewing tantrum. Shes also done a few sessions at our home when D would start balking and crying outside her office.

She has helped me try new techniques for calming her - chewy tubes, weighted blanket etc and we do discuss how to help her when she gets in that state. But there is always a clear sense that she is using her OT expertise and she uses language that makes it clear shes making suggestions that I can refuse. She also explains stuff to do with the nervous system and points out behaviour etc that indicates D is getting stressed and trying to calm herself (pointing out certain facial expressions and explaioing how her biting is probably connected with her trying to deal with a stress) This then helps me understand what I am seeing when dealing with her in these situations. Through this I have discoverd back and forth swinging as a calming technique and throwing soft toys at her during screaming fits (bizarre but its the sensory input that helps calm her - I wouldnt have thought to do this without OTs explanations of the calming effect of certain types of input) So there is a clear distinction between her meddling in with my parenting and her making her expertise available to help me figure out things that help that I can then add to my parenting. And its all about sensory input not behaviour.

I would really think about complaining and ask for a different OT (even if your DS would see her again its fair enough if you didnt want to). I cant believe she made you do controlled cryng! If thats something you wanted to do, it would be as and when you judge it to be ok and appropriate not on command grrr. Feel really really angry for you and angry and upset alos that this stupid woman made you feel crappy when I can see from afar that you have been doing the most amazing job caring and supporting your wee boy!

Hi also babiki - sorry got so carried away about Hazey and babyhazey. I hae a 2 and a half year old girl, GDD no diag. Lovely to hear your boy is walking and talking now.

Hello everyone, am sorry to hear of the hard times people have been having recently. Being just at the beginning of trying to understand DS's delay I think it's amazing anyone stays calm and rational at all!

Thank you for the hellos, links to SWAN UK and your shared stories. I haven't been able to keep up since I ran away from MN for a while after an AIBU thread wobble! Apologies for not responding to those who have spent time sharing experience to help me with mine.

I've been having an up and down time recently. DS has seen a physio now who gave us some great tips but it's going to be 4 weeks until we see her again which just doesn't feel right. I am looking into portage but as we are about to move its all going to be a time of limbo i think.

He has also had blood and urine samples taken which was just bloody awful. DS was shattered after being with physio and Dr. I said to Dr I would let him sleep before taking samples but she shooed me along to get them done straightaway. Of course by the time they were ready to take them he had just fallen alseep in my arms. Poor thing was awoken by the needle and I didn't realise I was supposed to catch his urine whilst also literally holding him down whilst they took blood. It was just totally awful, why on earth I didn't make them stop I will never know. Of course I didn't catch his wee so they made me sit there until he weed again. Two hours later he was in such a state and was so shattered and all he had managed was to poo on me and no wee. God it was a low moment and I just can't believe I didn't just say enough was enough. I can understand how you felt hazey.

We managed to get away in the end only for DH to tell me house purchase was falling apart. I think we have it back on track but the stress is just awful. Am eating my way up the size charts with no sign of it slowing.

Aside from that I've been convincing myself that DS will be fine and is just lazy but today I think I'm kidding myself. He is so happy but so passive, he loves watching just won't interact and use his hands. Does anyone else have babies who just suck their fingers all the time? Physio asked me what his favourite toy was, if only he would reach for one and show us he liked one!

Am now officially a bit stuck for with what to do with DS all day. We get out and about and see people but not all day every day. Today we have no plans and aside from a long walk it will be me sitting in front if him playing with his toys and hoping he joins in, what did you all do with your DC's if and when they were at this passive stage?

Sorry it's long, DH is convinced the positive stick will make everything 'normal' so putting it all down is a bit cathartic for me.

Oh and DS also has some hearing loss at the moment. They will test again in 3 months but expect it to be glue ear. He's always been very very snotty, poor thing does have a few things conspiring against him.

Poor ouch - sounds like its been an extra tough time just recently. (PS: AIBU is just the pits) As I said DD was v passive for a long time and I remember those exact conversations with her pead. We did music classes/rhyme time/CDs/singing at home - she really likes music. Also physical games - bouncing, swinging, swooping tickling cuddling stroking -all this is actually good for developing vestibular and proprioceptive systems my ot says - my girl loves horseplay type stuff. Back then she would smile with being bounced and liked to be held while I danced and jumped about. You can work in some speech therapy with rhymes and prompting 'again' etc Check out Hanen for suggestions.
Also I noticed despite passivity D got bored and then grumpy if she was in the same space all day so I took her out to different locations - she liked busy places and outside under trees - sometimes even with friends about. But she liked/s feeling the wind, feeling grass, watrching leaves, busy open spaces with crowds about, she liked toddlers. She didnt play at all or interact much but she wouldnt cry at end of the day if she'd been out for a few hours. You could also try some hand over hand banging of drums, tambourines spoons - take his arm in really big rhythmic motions and make lots of noise if hes ok with noise. Or clap his hands for him.
Dont underestimate how hard it is to try to play with an unresponsive child - I used to be in tears regularly - there is something really wearing about putting in a lot and getting very little response.

Bouncing on a gymball is really easy way of doing lots of boucing without getting shattered

firsttimer I think our DC's have been separated at birth, you absolutely again have described my DS (bar the wind, he hates the wind!).

And I am echoing you, tears tears and more tears. I think am just going through a period of adjustment but haven't quite worked out what works and what doesn't. And the not knowing what or if is hell for me. I like to know what is going on right here and right now, I don't even like surprises so this is testing me somewhat.

Great great suggestions, a very big thank you as they really are all things he loves and I should just concentrate in those rather than the blasted toys.

Its really nice to find someone with a similar child - for ages I never met anyone who sounded remotely like her! FWIW we are doing a lot better now and she is suddenly coming on in leaps and bounds.

Ouchdownthere my ds was very similar when younger, it is so diificult to motivate disinterested child!! He was almost always happy just to sit and watch for hours, people didn't understand what ate we worried about. He started crawling after having private physio only because we got a kitten and finally it was something that interested him. Also found rough and tumble games very good, dancing, spinning with him in our afms ( apparently this is good for balance).. And later on he did change, as if a light bulb switched on suddenly, we were soooo happy he started to express himself a bit. I started him on fish oils, zinc, magnesium and B12 when he was about 1 year old - that's when I was really worried, he didn't move at all, couldn't get himself to sitting position, didn't point or babble... maybe it did help.

Firstimer, so they have finished all the tests, or are you still in the process of testing?

firsttimer I have just read through all your posts on this thread, your DD is uncannily similar and you have written exactly how I am feeling. I am so glad I am not going mad! God that sounds awful, I am sorry I shouldn't be glad someone else has gone through / is going through this, but right now this thread is beginning to feel like the most sane part of my life. I am so pleased that your DD is coming on in leaps and bounds, it must be wonderful to see. So many people must take these new abilities for granted, I know I don't anymore.

Do you feel the functional learning activities worked?

babiki if I end up getting kitten now I am blaming you...... Am really pleased it helped though.