help

Hi there

I can totally sympathise, am relatively new to the forum but finding my way around. My 4.5 year old daughter is due to be diagnosed (hopefully with something I can work with and learn about rather than just 'we don't know yet' which is all we have had for the past two years) at the end of this month and also has epilepsy (diagnosed Aug 2011).

I am told you go through a grieving process when your child is diagnosed with something like ASD - denial, sadness, anger and acceptance. Well I too am at the anger stage now - blaming everything and everyone (including myself), doing the 'it's not fair, why us?' routine. I am taking it out on my husband the whole time and both my kids (short tempered etc). We had just about come to terms with the epilepsy and blamed all her delays and behavours on that, and then she started school and they pulled us up on her delays and learning disabilities saying it wasn't just epilepsy it was 'something else' but they couldn't pinpoint what.

I am constantly trying to find a reason for why this has happened to my baby girl, trying to cope with us not going to be a 'normal' family, working out how my youngest will learn to deal with his sister being 'different' as well, thinking of all the things I had imagined for her as she grew up that she may now never do/experience. It is doing my head in - I am hoping once I get a final diagnosis I can use it to research and learn more about whatever it is so I can help her as much as I can and find othe likeminded parents out there going through the same thing. That's why I am on here too...trying to find answers and support.

xxx

thank you all for your kind words. We havent had the best start in life i must admit, my eldest son is under investigation for ADHD and ASPURGES syndrom hes the 4 year old. My youngest had alot of (what the professionals call) febrile convultions... 9 fits in 9 months. we recently found out he has 1 single left kidney. I just never seem to get any good luck with life. My husband recently left due to us not getting on and has moved  about 40 miles away. i have no transport and no real support other than a few close friends. I didnt really have to fight to get my youngest assesed i think they could see the "traits" from quite early on. my eldest son is a handfuk and i just thought it was the norm. i only found out yesterday. im sorry to of gone on it just dont really know where to turn. this atm is prob the best thing iv got to talking to ppl who are having the same experiance as me. 

Hi there,

Everything you said rang true to me. I have an 11 year old son with an "atypical diagnosis" ie purely on the social interaction domain. I managed to get him into a special school for children with ASD's as the only other option for him that the LEA were offering were EBD schools - he'd been at one of those for 4 years and it was a disaster. I've had 9 years of being made to feel like a bad parent and even my own mother telling me she could do a better job. My 14 year old daughter is fine - so how can one parent create such vast discrepancies in their 2 children.

I too am coming to terms with the fact that we will never be a properly functioning family. I still don't feel we have the full picture of my Son's difficulties, and CAMHS seem to have run out of ideas. I'm now looking for referrals to a more specialist service to see if there are any other underlying associated conditions that have been missed. I feel only when we have the full picture will I be able to enlist the right support for my son and for us as a family. Did you have to jump through hoops too?

Wishing you all the best

Hi there.

On the whole it does get easier. My son's had his diagnosis for about 4 years (he's 10). There are still days though, when we've been called into school, or he's had major blow-ups, that we still get angry and upset. There's no answer to the question "why us?". It's just the way it is, but it doesn't stop the occasional grieving for the family life we miss at times. I also feel bad for my other 2 kids, when his behaviour affects how we are with them, which isn't really fair. But we're only human. Talking to other supportive people is the best thing. NAS have been great and we have a few friends who really have helped us through the rough patches.

Hang on in there.

It is very comforting to have such quick responses.  I am a bit out of the link as I am British but live in France.  We have good medical support (I think)  but at present we lack "peer" support.  Which is why this website will be so good for me I think.  I wonder if our sons condition will force us to come back to the UK as his "interventions" are all in French.  This Bi-lingual question will be another post another time I think.

  The poem about Holland is a good start.  Thanks.

Sorry to hear about your experiences. Have you looked into local NAS groups which may be able to lend some support?

In the mean time you may be able to take some small comfort from this;

www.child-autism-parent-cafe.com/welcome-to-holland.html

i no its really hard, my son was diagnoised last year i knew it was autisum, im still coming to terms, i no its very hard, life gos on you got to do the up most best for your child, the world dosent stop, they need your help and support and love, your their world, try not to get to stressed out, has your child picks up on this, i read alot of books on autisum, i felt this helped me alot, the ins and outs, these children are heros what they have to go through to get through the day, i no its hard work, when my autistic son comes up to me and gives me a kiss and a hug i no hes worth the weight in gold, hes my ideal, even though my son cannot talk, hes 4, in march, these kids are very clever, give them praise every time they do something, use single words, dont shout , they dont understand what you are saying, we all no whats its like we all been their, still going through it

hi there.

This is not an answer to your post, but you are not alone. I am right there with you.  Our 3 and half yr old son was diagnosed 7 months ago.  I still can't believe i have been chosen to live this hell.  Our other 5 yr old son is perfect to us, and I feel my life is currently in bits.  When our youngest was born, I had such a positive outlook but now it feels like we will never be a properly functioning family.  I try to be positive but it is so up and down on an hourly basis. It wears me out. I have had to give up work and the emotions I feel include guilt, pity, injustice, confusion and above all anger. I hate myself for being so angry and negative. There are great moments like when our son achieves something but it is hard to remember these in the crisis moments.  Like you I am currently looking for answers and help.  I hope there are people out there who can give us "new-comers" some words of support.  This is surely a path well-trodden, and I need to know how to find a positive attitude to help me and my family deal with this.