You know, we all have our own journey, our own path, our own way to find. When you become a parent, the track has to become a little wider. You have to be the guiding light for your child, you may plot your course with a bit more detail, you may actually create a map for the years ahead.
I say you but I don't mean you as an individual. It isn't your responsibility alone, I also mean your partner, husband, wife, significant other or whichever term you and they prefer.
These plans, maps or ideas are the main reason that many feel 'loss' when their child receives a diagnosis of anything. With a few minutes in a consulting room the future you have dreamed about can be taken from you. Your child will probably never have the future you envisaged for them. Your own future is suddenly thrown into the turmoil of the unknown.
What becomes apparent quite quickly, is that whatever your nature before, you must become a fighter. You must fight for the support you and they need. You must fight for their services. You must fight for the best you can achieve.
Who do you fight? Where do you go? What do they need? When will opportunities be realised? How do you start?
The system here in Ireland is not easy to navigate. The services available are out there somewhere, supposedly, but joining them together in a meaningful way is ridiculously hard. The civil service is full of 'jobworths' or 'not my departments'. There are a few gems but not very commonly found.
Recently I heard a mother describing an incident at a school holiday camp, where she was reacting to a comment from one of the camp organisers regarding how typically they only take 'additional needs children when they have full access to their SNA during the camps'. the mother had been unable to secure Summer provision. The comment left her in tears and she described how she felt that 'all she wanted was a normal child, this wasn't how she had thought motherhood to be'. She felt the staff at the camp were almost blaming her for them having to provide additional staff and care for her child.
ASIAM - is an Irish charitable organisation in Ireland set by an autistic adult. Recently they've produced a journey guide for parents of children - it's the first that plan/explanation of the next steps that I'm aware of. You can view here: https://asiam.ie/advice-guidance/diagnosis-clinical-supports/starting-the-autism-journey-getting-a-child-diagnosed-and-next-steps/?fbclid=IwAR1xd9uq6ZRkdQ2ovr_pAZG315BBSEakoIslSK81xbokSUUDjp9w_wKiWis
It may help guide, advise or at least forewarn you of possible bumps along the way. There isn't a 'how to' guide so to speak, each child is different, so it's near impossible to create an all encompassing map or pathway but it does at least give some general hints, tips and pointers.