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?

Oh I know what you mean about the positivity thing, dh came home the other day slapping his head with frustration, because he had just had a conversation with a friend about the possibility of ds having a genetic condition, his friend said, 'ok so if that's the case what will the drs do?' Dh tried to explain that if ds has a chromosomal disorder that that would be it, there isn't a magic pill, to which his friend said,'but you have to stay positive, I mean science is making advances all the time in this field'. He said that he felt as though he were being really negative, which is the very opposite of his nature. The thing is we have to be realistic.

I have no choice about keeping up with my friends with nt children as they are the mums and dads of dd1 and dd2's friends, who also have dcs a similar age to ds. At the moment I am thinking that ds will attend mainstream preschool and school with these children so I want him to socialise with them and be happy around them. My friends are lovely, but it is hard when they don't 'get it' in the way that my friends with sn dcs do (and I include my mumsnet friends in this!)

After having ds I went into a bit of a downward spiral, and ended up on anti depressants, one of the things I found most difficult about the whole thing was not wanting to be around my friends, I can't cope without them.

I miss my friends but I find it so hard being around people right now. Its not good and possibly a symptom of depression but ... A good friend told me she thinks people find it very hard to think/see bad stuff happen to good people so when they see something terrible happen to you it just doesnt compute. So they either try to find ways in which you are 'bad' and so deserve what is happening (the 'I talked/sang/whatever stimulating activity to mine all the time' school of responses) or they think that whats happening to you isn't as bad as you make out (the 'she looks so normal/Im sure it will be fine' bunch).

The worst thing I find for myself is that with the second bunch I feel like I almost want D to be visibly worse off just to prove my point. ("Look! look! Im not nuts,it IS bad, really really bad"). Because if she catches up in the next year they will all be 'see told you not to worry'. Then I feel ridiculous - in the end I would give my arm for her to be fine come next year. But I hate that my family basically thinks Im a neurotic drama queen mother

Just so you know you are not alone, Firsttimer, I have felt exactly the same way about ds. My friend is shocked if I use the word disabled about ds, as though I am in some way damning him to a life of disability by using the word - it drives me mad. It is like when you get a result saying that something has come back as all clear or negative, people expect you to be popping the champagne and can't understand the sense of disappointment - but it is a mixture of relief and frustration that there is no answer, the problems are still there, but there is no clear reason for those problems.

I worry that everyone thinks I am a neurotic nightmare of a mother as well,it is hard not to when you spend half your life at the drs/hospital talking about the minutae of your ds's health!

Thanks hazey it means a lot that someone else understands this as I often feel really bad about it - how can I wish her worse/not well...
Of course thats not actually what I wish, I just wish for something people could see.

I told our lovely newsagent lady a few weeks ago that D has additional needs. D often blanks her greetings etc and was getting too old to shrug that off. Lady was lovely, said something nice about D and also that she had wondered if something was up. I was glad to get it out the way - it had been bothering me and I had been debating what to do. I dont want to go about telling everyone and I dont want to have these conversations with D there. But I was in tears on way home. Its these things I cant explain to anyone: how it wears me down, upsets me for days, how I dont know what to do, how I cant stop worrying because I feel its my job to do my absolute best for her.

No time to post properly will come back later but argh with you on the positivity thhing it is actually quite insulting at its worst although I think most people mean well with it. I remember my aunt keeping on telling me I had to be positive when dd was diagnosed with her genetic condition shortly after birth. I had a newborn with a potentially life threatening and hard to manage condition ad it felt like she was telling me off for not dancing for joy!

Mismavis I am glad the appointment went well. What is the DDD study? DD is 5 and a half. I have decided tomorrow I won't meet my friends who will be at a childrens centre with thier DC, I will take her swimming I think instead-can't face the stress this time but will feel ok to do that given I saw them all (child free)yesterday.

Firstimer I also get the wanting to stay away from friends thing it is awful and I often find I feel better when I do, depends on the day. We moved a couple of years back and I didn't hesitate to leave friends behind (only to a nearby town)because at the time I wanted to not see the difference in children and wanted to protect dd somehow, can't really explain it but I then missed my friends and we have now settled nearer to them again, just not on the same road like before so its less painful. Obviously there were other factors involved in the moves but I know the way I was feeling about dd was influencing it, I'd just had an assessment that found her to have "profound" difficulties and it came as a massive shock at the time despite the fact I am certain all my friends thought I knew, I was in denial till then.

That makes sense about the blog. I like people asking me about DD's issues although sometimes when it comes to it it makes me feel out of breath talking about it-like a panicky breathlessness and I have to down play it. It probably puts people off asking!

The DDD study sounds interesting. I will ask our geneticist when we see her.

We have an appointment with the neuro disability team coming up AKA the community peads, I phoned to ask about multi disciplinary assessments as DD has never had the full 5 day thing which others here seem to get, they said its usually for pre schoolers. Hope we haven't missed the boat because she has been seen by them since three so am not sure why we havent been offered one.

Nice to see you all again. Mavis, glad the appointment went. It is great when you feel like someone is interested in making things happen for your child, too often it seems to be a drawn out wait and see attitude whne nothing seems to actually get done. The study sounds really interesting, I may just go and email that link to our paediatrician who STILL hasn't referred to a geneticist

It was iteresting to read all your thoughts about friends etc. I feel exactly the same way. Before I moved I still saw my NCT friends almost every week and it became harder and harder watching DS1s peer group leaving him behind, he was always excited to see them but they played and talked together in a way he just couldn't join in with. It made me so sad in way it was good to move away and not have to deal with it.

Now everyone who knows us has known he has additional needs from the first time the meet him. I make a point of telling everyone as I would rather talk about it than know that a minority will be asking/wondering about it behind my back (the joys of village life!). However, I now find myself arranging to meet for play dates whilst DS1 is at preschool, I just go along with DS2. I sometimes feel guilty about this, but I known that I need some time to feel like a "normal" parent, DS2 needs some time with other children that's not dominated by my coping (or not) with DS1. It taks a lot of effort to make sure DS1 can access activites that other children can just "do" and sometimes that can kind of take over.

Firstimer, for a long time after I had DS1 I regularly spend hours crying about the fact that something was wrong, I felt nothing would ever be right, I would never be happy because this terrible thing had happened, I also avoided going to things and seeing people. When I got pregnant again we had be constantly reassured by paediatricians that DS1 was just a late developer, sadly this hasn't turned out to be the case. Having DS2 was and is incredibly hard work as DS1 (3.5 yrs) is about 20 months in terms of development and DS2 is an advanced 17 months. Its like having twins but with DS1 having very limited speech he gets v frustrated and this turns into hair pulling/biting which is normally aimed at DS2. I don't regret how hard it has been and still is because DS2 has given me a "normal" parenting experience, he does all this things the books say he should do (!) and then some, he's given me the chance to go to toddler groups and be like everyone else. Now I'm not saying have another child at all, and I'm not saying I don't still have loads of time when I feel very very sad and wish things could be different. I suppose what I'm trying to say, in a very long winded (sorry) way is you won't always feel isolated and crushed in the way you do now. Things will change.

Lastly, re the TAC. I kicked myself up the bum and realised that I felt negative because, both DC had been up most of the night so I'd had no sleep, I'd had to leave DS1 coughing so much he was being sick with my Mum so I could go to it, and I had PMT. Have looked back on the action list and outcomes and realised it was quite positive really.

Hugs from me to anyone who needs one, I'm off to bed - night!

Thanks everyone, the support on here really keeps me going. I guess I am waiting for something somehow to help me get over this.
We are having a depressing couple of days. On sunday we trekked off to our functional learning appt. Its in another town so really a trek. And poor DD cried her way through the whole hour in a rage because she did not want to do the exercises. Then on tues was the monthly appt with the physio - who this time doesnt see much progress - even tho this month we have put extra effort into walking her between things at all times, taking outside to walk, encouraging her to walk rather than crawl.
This morning we did our usual learning play session and it just felt grim - stoic, but grim. We've been weepy all week and wondering why then my H said its the learning sessions that make him weepy - and he's the optimist in our household.
Its hard to put so much in and wonder if anything really is coming out of it. I think when we make progress it feels like its all for something. When we dont its like an abyss. We work and worry and wait and whats it all for?

And then she is so heartbreakingly lovely...and I feel like other people cant see that. Maybe even I dont see it enough.

I hate to say it but I do think/feel that part of the reason my family are being so odd with me is that they cant deal with her being SN. So they dont really bond, or learn how to interact and bond with her, they just sort of ignore her and shrug off that they just dont 'get her', or that the way I am prevents them from connecting with her. Part of me thinks its bull, they dont like her cos she isnt NT. They'd never admit it but thats what I think.

God it's tough sometimes isn't it. I'm afraid I am rather burying my head in the sand wrt therapy atm. The dds are off school for the Easter holidays and so our days are a lot less structured than usual, the good thing is that the dds interact with ds really well, so dd1 likes to sit and read him books and dd2 can lie on the floor and roll a ball towards him endlessly!

I sometimes have the opposite with our families, in that they constantly talk about how 'special' ds is, and make a lot of fuss of him, when they have never made that much of a fuss of our dds.

Can you and dh take a few days over Easter to just do some nice fun stuff?

Youre right hazey. I am going to spend the weekend just enjoying her. And doing that thing you do as a parent where you secretly think your child is the most gorgeous child ever seen upon this earth! I think I need to do that.

My family are in denial too, well some are-they say oh she's brilliant at such and such then don't believe me when I say well she is behind in every area and the amazing thing she is doing is age approprate for a child three years younger! But then others ask whats being done, when will we know, should we be doing more, time is ticking that kind of thing as if I am not already running round in circles.

They are alright really most of the time though and its only a few people who do those things. Interesting to read about other children as am due in June and my parents absolutely dote on dd, she is an only grandchild and with being quite scarily poorly at times is very much treated as special.

Good plan to try and spend the weekend enjoying dd firstimer,I feel I spend so much time looking at dd with worry then sometimes she smiles and its amazing, it all vanishes.

This weekend I will be mostly getting married! So will be very busy! Am terrified that dd will get ill and need hospital or something, better just not to think about it probably!

thank you! Am terrified but getting a bit excited now its coming together a bit more.

Have a fantastic wedding used2, I hope you will have the most wonderful and memorable day.

Firstimer, that sounds like a good plan. Someone on mumsnet sn board once said to me, he's still so little you need to make sure you still do the fun stuff, cuddles and tickles you would do if you didn't have the issues. It made me move away from just focussing on progress, learning, exercises and made everything much more enjoyable for both of us.

I'm lucky in that my Mum is fantastic with DS1, firm but loving and totally understands the reality of his issues (she ex-teacher and preschool advisor!). My Dad struggles with why he behaves as he does and why he doesn't learn in the same way not to do things, but then I don't think he was ever very in tune with children! My in-laws were in denial for ages and still now when I talk about his difficulties say "but he's lively though" as if I'm saying that he isn't because he has a disability. I do find it annoying but just ignore it and seeth silently!! They're great with him though. I do know I'm really lucky, I must remind myself more though.

Happy Easter!

Gosh, Congratulations Used2bthin - I hope you all have a fantastic day!

And

Happy Easter everyone

I hope we are all doing lovely things with our amazing dcs.

Congratulations used2 I hope you have a wonderful day

Happy Easter to us all

Hi everyone

Just had an excellent day with DS1 who had his first one to one swimming lesson. Our local pools only offer lessons from age 3 and the children have to get in alone with instructor on the side. As DS1 can't access this and in the interests of equality I've managed to persuade them to give us reduced cost one to one lessons.

It was excellent, instructor was fab with him and even has some rusty Makaton and most importantly he LOVED it. Massive grin and fifteen minutes of screaming in excitement!
After half an hour he was kicking his legs and flapping his arms and even managing to stay the right way up on his own for short periods. I couldn't believe it.

Lovely Hanbee

Thought we should also note on this thread that a few days ago (when exactly?) Hazey Jr crawled!!!

Nice to have some good news!!!

Aw Hanbee that sounds amazing! I try to take ds swimming twice a week, and we have access to the pool for the school my dh works for, so we are going to try and all go on a Sun morning as well. His SALT said it is one of the best forms of exercise for children with low muscle tone, as every movement they make in the water is toning them that much more, and we are having a push to try and improve ds's overall tone to help his swallow. I find it very different having ds in the water to the girls when they were little, they wanted to splash and automatically kicked there legs and arms, but ds just seems to hang in the water, so I have to move his legs in a kicking motion myself. I would love to find a swimming session with disabled children in mind, so that I could get some guidance in how to make the most out of our sessions. But I don't want to push ds in such a way that it just seems like more therapy, I think it's really important that he just enjoys being in the water.

Yes! Ds crawled!!! We have been on a high ever since, it has been an odd leap forward, as until now he has shown no interest whatsoever in crawling, but we diligently try it every day, putting him on all fours, and between dh and I (or one of the girls) we have been moving his legs and arms in a co-ordinated crawl, we also discovered that he enjoyed us crawling him up the stairs, so have been doing that every day (a killer for my back!)Then over the weekend he just crab crawled across the floor to get a ball and suddenly he is independently mobile, it is wierd normally he can only get somewhere if I am holding both his hands or he has his v-tech walker (which is way too small for him), but now he can move across the room on his own, although by the time he has reached his objective he is usually too knackered to get himself back up again!

We are seeing the geneticist this Friday, so any tips about questions to ask, would be great.

Hope you are all good and full of chocolate.

Hope you dinn't mind me reporting your news hazey?...I was a bit over excited and wondered whether you'd be all 'modest parent' and so hadnt said anything.

No,no not at all Firsttimer!

How is everything?