I fully understand where you are coming from. I have not seen a reason to celebrate a day such as this because I have seen so much heartache for my son and in turn our family. I have felt so alone and so confused in the whole world of helping, I feel that I didn’t give as much time to my eldest son because I was always so busy with Lochie.
My views have changed a lot over the last few weeks since meeting you and the other families who live in my area. Without that camp, I might not have found these people so quick and wouldn’t have gone looking for them. We very rarely got help for Lochie, then when I tried to get extra help I worried that we were taking help away from others with children who were not doing as well as he was.
Now I realise that he was as entitled to help as anyone and that I should not have felt “bad” asking for help. Guilt plays such a major part of everything, have I done enough, what else should I have done, why have I not been able to fix his internal pain and so many other questions. Guilt in general plays a huge part and even when I see his achievements and everyone says, “you have done a great job”, I still doubt that I have done enough. Being a parent is a hard thing and being a parent of a child with a disability is punishing and yet so amazing at the same time.
I have felt a weight lifted in the past few weeks as I can see a brighter future, Lochie has made friends and has opportunities he never had before. I have had a chance to discuss my feelings with other parents and find out I am not alone in feeling this way. I can finally see a reason to celebrate a day like this, to use it as a “spotlight” on the achievements we have made. I hope I continue to feel this way and that the NDIS truly makes a difference.