Feeling Guilty

Hi all

I have been struggling with guilt regarding feeling overwhelmed with the prediagnosis journey I am on with my 14 year old. I feel I have no right as I am not the one living with the condition. I am always positive in public and with my family and I know that really it's not a big deal.... but sometimes it's just too much for me to get my head around.

Am I the only one?

  • No your not, it's a very difficult time and exhausting. My son was diagnosed 9 years ago, it's such a relief to get through the other side, remember to be kind to yourself 

  • I'm not a parent (I'm awaiting an autism diagnosis myself), but it's natural for parents to worry about their children and want the best for them. If the pre-diagnosis journey is tough for your child, it's understandable that it's tough for you too. I know lots of parents have to quite fight hard for a diagnosis (I'm having to fight hard as an adult), so that must be challenging too.

  • The journey is long and stressful and I was so desperate for my son to get the diagnosis I felt he needed that it was all I could think about at times. He seemed to plod on and I was the one finding it hard lol.  It is really worrying and it would be more strange if you wasnt affected by the process. They are the ones living with the condition yes but you are also having to be a support to them in their journey. Dont feel guilty. Good honest parents are the most guilt ridden people in the world lol. We should remember to give ourselves a break more often. Good luck. Xxx

  • It can be a long and lonely journey. Not everyone will understand what you and your child are going through. Not even family outside your home. The best advice I was given was to take each day at a time and not to worry about the future. Easier said than done! My son was diagnosed at 11 and now 15. It's been a long road as his aggression showed around 11/12 and it's been terrible. He's medicated now. I do worry about the future but the future hadn't happened yet. All you can do is your best and try to be positive when you can. It's okay to cry and it's it's okay to be worried. You're human X 

  • It’s a lot to take in when your child gets diagnosed! I had both mine and my youngest daughter’s diagnosis within 8 months of each other. I had a few weeks where I felt really stressed and out of sorts. If I felt stuff normally then I’d probably still feel stressed and out of sorts! Be kind to yourself, it’s ok to feel overwhelmed! Are you and your child receiving any support following their diagnosis?

  • It's Ok to be feeling this way and you have every right to your feelings - it may not be you being diagnosed, but you are living with the condition, you are sharing the path of your precious one on this journey - it's your journey too & the responsibility that comes with it can sometimes feel overwhelming. The feelings that come with it can leave you exhausted. It can be extremely lonely, it can be terribly frustrating. You often find your having to repeat yourself and kick & scream to be heard sometimes. And it can feel like it's taking forever (5.5 years for my oldest, 2.5 years for my middle youngest & currently in process with middle biggest) - but hang on in there, you're doing great!

    And even if you know in your heart of hearts that the condition is there and all of the professionals in the various meetings on the road to diagnosis are in agreement - when you get that final letter confirming it - it's still a thump in the gut. And I think it's that way because your instinct to protect prevails and you are frightened for your precious one. You are frightened of the unknown. Of what this diagnosis means for them. Of how you can kit them out with the tools they will need for this life long condition. Of how you can change the world for them so that they don't have to face adversity.

    It's a hell of a lot to get your head around, it is a massive weight to bare and you have absolutely nothing to feel guilty about love - not one bit.

    There are a few good groups on facebook ran by parents who I find a wonderful source of support. People who are walking your path. Who have days where they could scream. Who have days where they are amazed by their precious ones. Allsorts.

    Just because the path may be lonely sometimes, it doesn't mean that you shouldn't feel unsupported.

    You're a rockstar, you're being there for your kid, you're strong, keep your chin up love, you'll get there.x