lindy-lou Report post Posted January 2, 2006 yesterday i got awfully upset about indias diagnosis and what its going to mean for her,its the 1st time since DX that its really upset me,ive tried to be really positive and determined to fight every step for her and be her advocate,but its just really got to me at the mo. i feel so sad for her that shes going to have to contend with all the problems she will come across and sad for me too that i am going to have to deal with it too. my DH isnt really coming to terms with it and i think he thinks their going to turn round and say its an awful mistake,he hasnt even told his mum about DX yet,everytime i tell someone about india he jumps in with "its only mild" which i find really offensive because i dont see anything "mild" about it,i know he has to deal with it his own way and its difficult for him because indy is his 1st child whereas shes my 3rd so i do have experience to compare her with. i also have so many unanswered questions and i was just given a DX and thats it,no more input,im making an appointment to go back to the consultant to get these questions answered,and to see if i can get any help with her sleep problems coz im finding it hard to function when she's up from 3am every night.im going to the child development unit this week to get help filling out the DLA form,which im dreading as well,it all just seems such a battle which i havent got the energy for at the moment,i need to find my fighting spirit again, just wondered if anyone else got this low a few weeks after DX when it all begins to sink in and hit home a bit more?i just feel its so unfair that my poor little girl is going to have it tough,i love her so much Quote Share this post Link to post Share on other sites
Brook Report post Posted January 2, 2006 (edited) Hi Lindy-lou, <'> <'> Yes, I can remember getting quite low a few weeks after dx, and if I'm honest I still do get the odd day when I feel overwhelmed and low. My son was dx ASD three years ago, although I do have to say that we are learning everyday and face new dilemas, but I do feel a little more in control of things now, I think it comes with gaining more knowledge and really getting an insight into 'why' my son maybe doing something. Also I still do get low days when I think about the future, but I remind myself that we must do what's best for the present to prepare him for whatever the future holds for him. I do know where you are coming from and wanted you to know you are not alone, also I think we do need to go through this process to be able to gain the strength to move on. I also love my boy sooo much, that's why it really hurts, but it's not all doom and gloom, my boy has come a long way in the last three years, we have lots of ups and downs and will have many more. Take care Brook <'> <'> <'> <'> Edited January 2, 2006 by Brook Quote Share this post Link to post Share on other sites
adamsmum Report post Posted January 2, 2006 I still get very upset about Adam Xmass was very hard because he had no uderstanding of what was going on. I cant help but wonder How he will turn out . How he will cope when I'm not around. But at other times i think how lucky i am to have such a speceial boy. It works both ways they may be facing problems but theres a lot to learn from them. they each have something to offer that others could not. For Adam it's the ability to make everyone who meets him love him. Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 2, 2006 thanks you 2 for your replies,im sure il feel better tomorrow. Quote Share this post Link to post Share on other sites
Paula Report post Posted January 3, 2006 (edited) I too have days when im filled with dread about what the future might hold for my AS son.I sit i cry and weep like a baby and my heart feals so so heavy.Is it worse for us mums. I know its daft because i know deep inside i am not to blame for the fact my son was born with choanal atresia and then we discovered he was As but theres a little voice inside that still says youre his mum you carried him in some way people will blame you the finger always points at the mother.Thats what i cant live with thinking i could have altered stuff that ultimatley im the cause of the AS. Will that fealing ever go away i dont think it will. Me and my husband have arguments about how best to deal with aspects of our sons behaviour.Both our approaches are different.I think let him be let him do whatever he wants mainly because im scared if he kicks of i wont be able to handle him because hes a big lad and getting stronger i just want a quiet life.My husband thinks im too soft and should get tough.But hes at work and im the one ultimatley left dealing with the tantrums alone. Im sorry im going of on one. <'> <'> <'> to all in need of it after xmas. Edited January 3, 2006 by Paula Quote Share this post Link to post Share on other sites
LizK Report post Posted January 3, 2006 We got Adam's diagnosis in November, it was not unexpected as we'd suspected ASD for a long time and at the time I felt pleased to actually have got a diagnosis. However I have had times of feeling low since then, and find I am more overemotional over it all. This has taken me by surprise a little as rationally the diagnosis changed nothing and it wasn't anything we weren't expecting. Maybe it's just reinforced things, I don't know. The last 6 mths have been hard as behavioural issues have become more apparent, before then he was a child with just a language and developmental delay but the behavioural stuff has made things harder to deal with I think and in many ways reinforces the diagnosis Sometimes I could cry for Adam when I see the look of distress or puzzlement on his face when trying to comprehend things or make sense of situations. It's so hard at times Sorry droning on there but yes I do understand how you feel Liz x Quote Share this post Link to post Share on other sites
ceecee Report post Posted January 3, 2006 <'> <'> <'> <'> To all of you that are struggling. Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted January 3, 2006 Sometimes I'm sad about Martin's AS but I'm happy we got the dx because we are already beginning to reap rewards - the support we have received from the medical services has been excellent and my regular visits to this forum have helped me deal with quite a number of his problems. Martin too (thanks to behavioural therapy) is starting to identify what sets him off and is beginning to walk away from situations that cause his meltdowns. The light at the end of the tunnel is still just a pinprick but I do feel we're at least going forwards not backwards now - and for a long time that wasn't happening. All we need now is an understanding headteacher and things would be OK Keep strong, Daisy <'> <'> <'> Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 3, 2006 i think ive sort of got my head in a better place now,i suffer with depression and it can engulf me at times,as well as indias AS i have had some pretty major problems at home too,the last year has been particularly horrible in alot of ways,i feel more positive now that ive made some decisions to overhaul the areas of my life that cause me stress and problems and get me in such a low way,sort of had a big talk with myself about being the only one who can sort out all the messes im in,i dont mean to bring my personal problems here to this forum but sometimes theres no where else to turn so i hope you dont think too bad of me. so..onwards and upwards into 2006,my only real new years resolution is to try and keep a positive attitude and try not to dwell on what i cannot change,and i wouldnt change my baby for all the tea in china. Quote Share this post Link to post Share on other sites
Brook Report post Posted January 4, 2006 i think ive sort of got my head in a better place now,i suffer with depression and it can engulf me at times,as well as indias AS i have had some pretty major problems at home too,the last year has been particularly horrible in alot of ways,i feel more positive now that ive made some decisions to overhaul the areas of my life that cause me stress and problems and get me in such a low way,sort of had a big talk with myself about being the only one who can sort out all the messes im in,i dont mean to bring my personal problems here to this forum but sometimes theres no where else to turn so i hope you dont think too bad of me. so..onwards and upwards into 2006,my only real new years resolution is to try and keep a positive attitude and try not to dwell on what i cannot change,and i wouldnt change my baby for all the tea in china. lindy-lou, <'> We all have all sorts of different problems, nobody is going to think bad of you. <'> Brook Quote Share this post Link to post Share on other sites
Oreo Cookie Report post Posted January 4, 2006 Don't be sad she is special. we are all special. every one and people wish AS and ASD are just a little bit more special because we are super honest and show you we love you in our own very special and secreat way some times. That was what I was told Quote Share this post Link to post Share on other sites
lindy-lou Report post Posted January 4, 2006 Don't be sad she is special. we are all special. every one and people wish AS and ASD are just a little bit more special because we are super honest and show you we love you in our own very special and secreat way some times. That was what I was told thanks oreo,you are very special and so are all our kids,it just makes me sad when i know what a tough time you get,im feeling much better and more positive now,thanks to everyone who replied,its nice to see that people care <'> Quote Share this post Link to post Share on other sites
