Feeling Sad after Diagnosis

[Bumblelion]

Just need re-assurance that what I am feeling is "normal".

My DD is nearly 3 and has recently been diagnosed as having Sotos Syndrome although this has not been confirmed by DNA yet. Since the diagnosis I have felt fine about the diagnosis and have tried to find out as much information as possible. I have joined the Child Growth Foundation which deals with over- and under-growth in children, Sotos Syndrome being one of their groups.

On Saturday just gone, I went on a convention in London which I felt would be beneficial. I have to say that during the break I had to go outside and just broke down in tears. I am not in denial about the syndrome but I thought I would hear positive stories - one I heard that stuck in my mind was how "proud" a mother was that her daughter got out of nappies at night-time at the age of 21. That just devastated me - I know for the mum talking it was a proud moment but for me it was not something that I needed to hear.

Saying that, I met a lovely lady with a daughter the same age of mine and we are slowly building a friendship (as I met another girl of 19 who had Sotos who had grown up with a friend who also had Sotos Syndrome and this girl had found it very beneficial to have a friend that was going through the same emotions/difficulties as her).

I found the whole convention a bit over-whelming and a bit too much to take on board after only having a diagnosis for such a short period of time. On one hand I am glad I went, but on the other hand I felt that it hasn't done me a lot of good - I seem to have lost sight of S (my daughter) and her capabilities at this exact moment in time and am more caught up in the negative aspects of the diagnosis.

I feel that generally I am a happy person who just gets on with life and whatever it throw at me and I can't believe how "down" I have been feeling since Saturday and just keep getting upset. When I am with S I feel so positive but when I am talking about the diagnosis or about Saturday I just feel so upset and then I feel guilty that I am getting upset about S and that makes me feel a horrible mum.

I love her to bits and wouldn't change her for the world - she really is a happy outgoing confident friendly child (totally un-sotos like!) and is such fun to be with but I feel I shouldn't be getting upset and don't understand why I am.

The diagnosis has not changed S and who she will be come and what she might achieve in life.

She will be 3 on Sunday. Her main problem area is speech/communication She is getting better as time goes on - has SALT, got SENCO/Ed. Psych. involved - but that is her main delay.

I like to focus on what she can do, rather than what she can't - can walk, run, jump, stand on one leg, can say more than 20 words - but not sentences - the most I get is two words.

Bumblelion - just wanted to add my support too. Support groups are great, if they give support IYKWIM, sometimes they can have the opposite effect and drag you down abit. You sound like a great mum . Keep focusing on the 'can do' stuff and take each day as it comes for a while, thinking too much about the future can get a bit scary.

Bumblelion, I haven't read the other posts here but just want to also offer my support. Iam sorry you are going through this. I have been reading your posts on here for years now and I remember all the trouble you went through with your dh whilst you were pregnant.
From those posts it was obvious you are an incredibly strong woman and an excellent mother.
You always seem to cope and come through your worries and Iam sure you will cope this time too.

How are your older two now? And is your ex helping you thru this?

from what i've read sounds a bit like there is a huge range of severity....and i suppose a practical way forward is for you to for now obviously hope that she is at the milder end and will grow to be like the woman at the covention who had the sydrome ....but you would never have guessed....and then if the opposite is true that it will hopefully be a gradual thing and you will adapt and accept the limitations etc.....

DINGLE....you sound lovely too. Can i ask whether this is kind of the same for DS.....about 10 yrs ago a customer of mine came in the shop with a 6 yr old son with DS. Like you say- i was able to see that he had DS....but he was as she said 'able' and fairly independant....and the pont she made to me was that when DS is diagnosed...if it hasn't been detected in pregnancy (she chose to not be sctreened)...that no one can tell you 'how severe' the DS is....and that some children are more dependant than others....obviously this must apply to all disabilities....but i often think of this little lad and wonder what he's up to now. There is a 18yr old ds girl who works in a local shop and i see her going to college sometimes and i feel so proud of her and i don't even know her name.

Hi Bumblelion. My dd also has a rare syndrome - Aicardi Syndrome. I think the really important thing to remember is that, with most of these syndromes, there is a massive spectrum in terms of development. I think it is only natural that after diagnosis you want to find out as much as possible, I certainly did. It is also natural I think to search for the positives - I know I spent hours trawling the internet trying to find 'good news' stories. I was terrified by some of what I read so I can totally empathise with how you must have felt at that conference. My blood used to run cold ever time I read about more severe cases.

I think you were actually incredibly brave going to the convention. I have only just now decided I could face being in contact with other parents of girls with Aicardi's, 18 months after diagnosis. And a large part of that is not wanting to face the 'possible' future.

I would also reiterate what others have said about conventions often being attended by those who are most affected by a syndrome. For eg The Aicardi Syndrome foundation is currently looking into how it can involve the families of children who are doing 'well' because it is very aware that it only really reaches those most severely affected and therefore this gives a skewed view of the syndrome.

I have a friend in the US who's daughter with Aicardi's is doing incredibly well, so much so that she never told anyone the name of her daughter's syndrome for about 6 years. She didn't want people to make assumptions about what she would be able to achieve because of her label.

The other thing I think is that it is sometimes really hard to seperate your upset about your child's diagnosis from the child. Of course you love her, of course she is the same child she was before and of course you accept her totally. But it takes a while I think to 'accept' a diagnosis and all that it means. That is totally different from not accepting the child, so please don't feel bad about feeling sad about it.

the other thing I want to say, as others have, is that it does get better and it does get easier to see beyond the diagnosis. For a long time I felt that my whole world had been reduced to the simple sentence 'my daughter has Aicardi Syndrome' but now tbh I hardly think about her diagnosis. It is useful to have one. But it in no way defines her. It tells me that her brain is formed in a certain way. But it tells me absolutely nothing about who she is and what she can achieve.

So much of what you said reminded me of me about 18 months ago when I got my dd's diagnosis that I really felt I had to post. Sorry it is so long. I suppose all I am really trying to say is that even only 18 months later, I feel far more at peace with her condition. I have no doubt you will too .

Mrs F's point about how you adapt is a really good one. I think I would have been horrified to think dd wouldn't even be crawling by the time she was 2, but now I'm there - it isn't nearly so terrible. Going now - gone on far too long .

It can be such a shock when we get the diagnosis and so often we only hear the worst case scenarios.... and as a parent you wonder where to go next - seek out information etc. You will grieve and feel sad from time to time even when you are the most positive person and are 'coping' with life as you know it.

I found it very upsetting each time I focused on the long term.... For me - I just take each day as it comes and enjoy each new little thing that my dd does. ( she is just over 2 with down syndrome)

You are not a horrible mum - we all go through that upset and life can really overwhelm us when we just want to stand in the garden and scream.... shout... say it is not fair and you know what - it isn't. But you obviously love your dd and as parents we have to remember not to lose sight of the dreams we have for our children. They may change and be adapted as time goes on but we should never forget them.

MrsF, yes very true to us to. When dd was born I was completely ignorant to DS, I did some basic reading but cut out a lot of info too-thinking that it was just too much too soon, trying to concentrate on the problems we were facing on a short term basis, rather than wondering what she would be doing at 20. It is stil very difficult to do completely and unfortunately doubts & worries do creep into my head every now & then but I try to brush then to one side.
After reading the typical issues involved, yes, I had to look on the positive side of everything. There just seemed so many conditions common to DS, it's almost like a lottery as to how dd will be affected. It could be eyesight,hearing,heart,thyroid,the list goes on.
I remember when dd was about 6 weeks old she failed her 1st hearing test, I was gobsmacked. I had accepted the fact that she had DS, but this was our first hurdle, the first thing "actually wrong" IYSWIM.
Sorry to go on, so many memories here, so many emotions. I will finish my rambling on a very positive note. DD overcame her hearing problem by her 1st birthday, not saying that it won't recur, but our first hurdle is far behind us now.

Oh pull yourself together Dingle!!
eidsvold, how lovely that bit about dreams. Sums it all up for me really!

Haven't read all of this but want to say that its a good idea to try to take things at YOUR OWN pace, don't go to support group, conferences etc if you're not ready. On the other hand don't avoid them for too long as you may find them useful if you try them out. I think it was lucky for us in this respect that networking and information sharing was so much more difficult when we started (email, internet etc) but it did make it more difficult to do those things too....

Bumblelion, you sound like you're doing fantastically! Don't give yourself a hard time for feeling down- however positive you are it's still a very hard thing to come to terms with. But it's so true, as others have said, that you totally re-evaluate your expectations. I remember being horrified at the thought of my dd not developing speech (she's severely autistic). Now it's not on my radar and if she learns to give over pictures effectively to request I will be overjoyed. Not that I've given up on my dreams- just that I'm trying to take one day at a time. Getting upset is part of the process. I'm going through a hard time again now- a year and a half after diagnosis- and this is apparently normal, too. Big hugs...

Where is this group please my son is waiting for results but the dr seems to think he has stosos I would love to speak with other parents. Also I totally get how your feeling hugs