Will probably be special needs, but what?

[Catbert]

A dear friend has a DS2 of about 6 months. He was born (C-sec) a large boy, gained weight well, and we all said "wow, what a lovely healthy chap you have there!" as you do.

Anyway - it didn't really occur to us that anything was wrong. Including mum. After a visit to A&E because of a worry due to chest infection in the poor wee babe, it was noted that he didn't seem to be hitting the usual milestones. Lots of tests later, and no diagnosis, other than more tests to be done, a head circumference that apparently wasn't growing as fast as it should, no particular interest in toys, grasping, rolling over, sitting.

Now I know I can't ask for a MN diagnosis, but I am totally devestated for her news that there is def. something wrong with him developmentally, but so far they cannot ascertain what it is.

Has anyone else here had similar experiences? I would like some positive thoughts for her when I do see her this week, and get an update on the situation.

i honestly have no suggestion of what might be happening here, but think its wonderful your friend has you there for her.

when they say no hitting milestones, are there any in particular?

it sounds as if - in the absence of something more concrete- he will get a global developmental delay diagnosis. It's a tough one as it really gives no indication of how he will progress (none of the diagnoses do though really). It's hard to know what to suggest other than to see if she can contact the local portage service. I wouldn't try too hard to find positive thoughts (she may not be ready to be positive). Just talk about him (lots of people won't as they'll be too embarrassed) and ask questions about what happens next etc. And maybe introduce her to mumsnet?

At 6 months, he is still like a newborn, in terms of just lying, not really seeming to be engaging in toys, baby gym, grasping and holding and exploring toys, no rolling, no sitting. Apparently it's not a case of "lazy" and slow developer - they are thinking it is a more serious developmental issue than this.

She is very pragmatic, but must be going out of her mind with worry now. I know I would be. It's so hard not to have any diagnosis to work with yet. She'd rather know the worst so she could plan how to proceed.

diagnosis could be months away (judging by what mieow went through and other mumsnetters as well).

I know what she measn about wanting to know, i think everyone feels like this at a time like this. Hope she gets answrs soon.

catbert- it'll probably hit her after all the meetings etc are over. I am fine whilst everything is going on- but the week after- big low. I recognise it now and know it'll pass but the first few times were hard. Maybe see if you can meet up regularly just so she's seeing someone during the low times.

Feel for your dear friend Catbert . My ds2 is 14 months now and we have been going through the gradual realisation that all was/is not well - we are still in the diagnosis stage .

Just being there for your friend will be a great help (fwiw, in my case, sometimes I feel like telling my close friends chapter and verse, and sometimes it is so draining that I dont want to talk about it at all (if your friend has moments like that, please respect her feelings) - that's when I need to be taken out of myself (Good friend took me to see Bridget Jones last night and that was just what the doctor ordered iyswim). This is far the worst period in my life to date (it is a living nightmare, but what keeps me going is my dear little son) I feel and I imagine that your friend, like me, will be very and . My only way of coping now is the `one day at a time' thing and I am trying not to look too far into the future as today is all any of us really have.

I myself have just started to see a counsellor and have found real inner strength from a CD called InnerTalk - forgiveness and letting go, which is available from Innertalk.co.uk (free of charge). Sorry to ramble, but hope this post has been of some help to you.

The Mums on this site have also provided real moral support and a mine of information - Thank You all . Perhaps it might be appropriate for you to point her in the direction of Mumsnet?

please don't quote me

• but this sounds like my dd 2years ago she failed to "do" all the normal things sitting crawling grasping etc after battling it out with her HV we got an appointment with a ped who within 5mins of being in the room diagonised CEREBAL PALSY.

althought the past two years have been hard dd is getting there now she started walking in her own way and things are comming together.

I not by no means saying this is what your freinds baby has got but i'd say they def needs to see a ped so they know either way.

best of luck she's lucky to have a friend like you.

xxx

Good advice jimjams. thanks. I shall definately get her on this board when she needs support from people who understand properly. I always feel completely inadequate because how CAN you know or understand - when it's not happening to you. Another friend had a baby with Downs Syndrome recently, and I know she's finding it hard to come to terms with. I heard someone saying "yes, but they're very loving children" and although this is no doubt true, it is also true of all children - and is a classic glib platitude from people who have no idea.

It's like anything I suppose - you need to discuss with people who really know.

Catbert, you sound lovely and you've got it spot on. I think you will be a wonderful shoulder for your friend

I suspect your friend with the child with DS will get to the stage where she wants to punch anyone who says that! I really appreaciate my friends who don't really comment on my situation, but just ask and then listen if I want to talk. TBH I've now found a lot of friends with autistic children and I tend to offload on them as they can do the same back and we can find some humour in our situations.

You sound like you have a good understanding of the sorts of things she will be feeling though- and so you'll be sensitive and a great friend. I do hope she gets some answers soon.

My friends have a SN son and I asked her for advice for your friend. She said:

Don?t wait for a diagnosis ? it could be months or even years. Assume that the child has a delay and start finding out NOW what the parents can do themselves to stimulate development. Its good that it has been picked up so soon ? there is a crucial window in the first two years. Don?t rely on the doctors ? remember that the medical profession are focussed on ?curing? rather than encouraging development.

They got a lot of help here:
www.stbriavels.org

HTH

just wanted to pop in and say thanks so much for your links, information and support. MN is a fab place to be.

It makes me feel armed with something tangible to offer. He's such a gorgeous little chap.

Hi Catbert,

Your friends ds2 sounds very like my dd who is 7 months old. She too cannot roll over, grasp toys, sit, minimal head control etc. We're still waiting for a diagnosis, apart from a supposedly mild abnormality on her MRI scan and a moderate vision impairment, we just have a diagnosis of development delay and weak muscle tone.

Jimjams advice to ask and then just listen is spot on IMO. We've found that a lot of people are scared to ask about dd's progress and some friends have disappeared into the woodwork, or so it seems. I've found that joining a local support group for kids with SN has helped, as it has offered me the chance to meet other mums in the same situation, and to have a good laugh as well as an offload. If you friend has the opportunity to do the same I really recommend it. It is scarey at first, as you have to admit that there is a problem to yourself, but it's been a lifesaver for me. Portage is also a really good idea.

Merlot's comment about one day at a time is also sound advice, I do have some days that are just pants and I feel we're making little progress, and others when I do feel that she is really changing (recently she's started to really vocalise and squeal which is great )

Hopefully you can persuade her to join MN too (everyone here has been great).
You sound a great friend to have

just to revive - she deserves all the help that can be given by the wise mumsnetters

Hi Catbert, I'd just like to agree that listening and just being there for your friend whether she wants to talk or not is the best. My dd2 (age 3 1/2) also has developmental delay with a small head circumference as you describe, and we also have no diagnosis. It is hardest when people try to avoid what is happening.

There is a Yahoo group for 'microcephaly' (the small head size) but it can be very depressing and probably not what your friend needs right now. I have learnt from it though that are a huge range of possible outcomes and no one ever really knows what will happen.

yes me and caroline joined the microcephaly group and got both depressed and obsessed with head circumfurences hope you are okay caroline!

cathbert my daughter has global development delay and microcephaly 9small head) we havent got any diagnosis yet and dd is 5. Had same sort of development pattern as yuour friends son. They will do loads of tests but there are 100's of causes of microcephaly and a high percentage of kids with it dont ever get diagnosed.

Thanks once again ladies. Your support is so touching and makes all the difference in this difficult time.